Shared posts

26 May 21:12

Hark, A Vagrant: Saint Cecilia




buy this print!

I guess we don't know if Valerian was a virgin or not, but if he was, I doubt the choice would precede his name if people prayed to him.

If you grew up Catholic like me you had a lot of those picture books full of saints. They were great because they were crazy and gory and exciting, and they could be inspiring too. And if you were a girl, you were probably given a lot of cards and books and whatnot about all the virgin martyrs. Saint Cecilia didn't get it as bad (virgin onslaught-wise) as .. oh, anyone from Saint Agnes, Lucy, Agatha, Maria Goretti (yikes)- but like all the virgin martyrs, this aspect of her life is presented with a certain... fervour. Gather round girls, let me tell you what a woman should be! And so when you start questioning what's going on in the Church's attitude towards ladies, these virgin martyrs are among the first to go.

I was reading a bit of feminist interpretations of these women's lives, and it was super interesting, to try and think of their stories in their own terms (as much as you can anyway), rather than a tool to tell me what I was and was not supposed to be. I'm no theologian, I just liked coming back to something that did have an impact on me, years ago. And so here's Saint Cecilia, because the image of her still touches my heart, I admit.

I like a good rant now and then, don't you?
19 May 18:54

As in 2014, “right-to-try” laws continue to metastasize in 2015

by David Gorski
mturovskiy

Right-to-try laws, cui-bono? Libertarian think-tanks and pharma shills, it looks like.

Last year, I did several posts on what I consider to be a profoundly misguided and potentially harmful type of law known as “right-to-try.” Beginning about a year and a half ago, promoted by the libertarian think tank known as the Goldwater Institute, right-to-try laws began popping up in state legislatures, which I likened to Dallas Buyers Club laws. Both Jann Bellamy and I wrote about how these laws are far more likely to do harm than good, and that is a position that I maintain today. The idea behind these laws is to give terminally ill patients access to experimental drugs—in some cases drugs that have only passed phase I testing—that might help them. It’s an understandable, albeit flawed argument. After all, it’s perfectly understandable why terminally ill patients would fight for drugs that give them hope, and it’s just as understandable why politicians and the public would see such a goal as a good thing. In practice, as I will explain again in the context of this update, such laws are far more likely to harm patients than help them. Indeed, as you will see, in the year since the first wave of right-to-try laws have passed, not a single patient that I can find has obtained access to experimental drugs under a right-to-try law, much less been helped by them.

Unfortunately, given how effectively “right to try” has been sold on grounds of providing terminally ill patients hope and as a matter of personal freedom, it’s clear that this wave is not going to abate. Since Colorado passed the very first right-to-try law almost exactly a year ago today, a total of 17 more states now have passed passed similar legislation, the most recent being Tennessee, and 22 others have introduced legislation. It’s a good bet that right-to-try will pass in all of those states, because, as I’ve explained many times before and in many interviews, if you don’t understand clinical trial ethics and science, opposing the concept of right-to-try comes across like opposing Mom, apple pie, and the American flag, and leaves opponents open to false—but seemingly convincing—charges of callousness towards the terminally ill on the order of enjoying drop kicking puppies through flaming goalposts.

The con game that is “right-to-try” metastasizes

As I’ve pointed out many times before, opposing right-to-try is actually pro-patient, because these right-to-try laws that are passing all follow an explicit template written by the Goldwater Institute, and that template is very much a sham. For one thing, states do not control drug approval; the federal government through the FDA does. Consequently, state-level right to try laws, while giving the appearance of giving access to experimental drugs to patients, do nothing to actually achieve that goal. Worse, even if a patient were to get an experimental drug through right-to-try, these laws very much reflect the think tank that created them in that they leave the patient basically on his own. He can be charged the full cost of the investigational drug, which means that the only people who might be able to take advantage of these laws are those who are already rich or who are very good at fundraising. Worse, these laws explicitly indemnify drug companies and physicians from any liability arising from adverse outcomes, which means that even if a physician committed malpractice in advising or administering right-to-try drugs he probably couldn’t be sued. Moreover, such laws explicitly bar state employees from blocking or attempting to block an eligible patient’s access to an investigational drug or treatment. Even though there is a clause that says “counseling, advice, or a recommendation consistent with medical standards of care from a licensed health care provider is not a violation of this section,” where does “advice” end and “blocking” begin? Certainly as a physician in what is now a right-to-try state whose law has identical language, I wonder.

Even worse still, many of these laws, such as the one in Michigan, are written such that if a patient suffers a complication from a right-to-try drug or treatment his insurance company can argue that it doesn’t have to pay for the resulting care to treat that complication. Indeed, Colorado’s law requires that informed consent for right-to-try must explicitly make clear that, “the patient’s health insurer and provider are not obligated to pay for any care or treatments consequent to the use of the investigational drug, biologic product, or device” and that “in-home health care may be denied.” Elsewhere, the Colorado right-to-try law states:

An insurer may deny coverage to an eligible patient from the time the eligible patient begins use of the investigational drug, biologic product, or device through a period not to exceed six months from the time the investigational drug, biologic product, or device is no longer used by the patient; except that coverage may not be denied for a preexisting condition and for coverage of benefits which commenced prior to the time the eligible patient begins use of such drug, biologic product, or device.

In other words, if you access an experimental treatment under right-to-try, and you suffer a complication from the investigational treatment, you could well be out of luck getting your insurance company to pay for the medical and/or surgical treatment necessary to treat that complication. If your insurance company so decides, you’ll be on the hook for everything subsequent to that treatment. Indeed, to me the language in some of these bills implies that insurance companies can deny coverage for any new problems that come up after the patient starts using experimental therapy, whether caused by that therapy or not. These issues have largely been ignored in the news coverage of these laws, but the oncology community is finally waking up to them, as demonstrated by an article published a couple of weeks ago in HemeOnc Today in an article entitled “Expansion of ‘Right to Try’ legislation raises ethical, safety concerns“:

“There are a lot of issues not addressed in the bill that make the feasibility more challenging,” W. Thomas Purcell, MD, MBA, associate director for clinical services at the University of Colorado Cancer Center and executive medical director of oncology services at University of Colorado Hospital, told HemOnc Today. “If the drug is made available, who is going to administer it? Who is going to pay for any side effects related to the treatment? Are insurance companies going to cover any treatment-related complications? There are a lot of practical things that come into play with the introduction of the law, although the law doesn’t address any of those things.”

Actually, although he raises the same concerns I’ve been raising for over a year now, Dr. Purcell is about as wrong as wrong can be about one thing. The problem is not that the laws don’t address these things. It’s that the laws do address these things rather explicitly. Dr. Purcell seems blind to how these laws address these things, which is in a way likely to be highly detrimental to patients. In fact, I wonder if Dr. Purcell has even read his own state’s law! It says right there in black and white that insurance companies don’t have to pay for care or complications related to such drugs! That means that either the patient does, or we taxpayers do when patients suffering such complications are forced to go on Medicaid because they can no longer afford their medical care.

Another example of someone echoing what I’ve said many times appears here:

“People do not actually read the bills,” Alison Bateman-House, PhD, MPH, MA, Rudin postdoctoral fellow in the division of medical ethics at New York University Langone Medical Center, told HemOnc Today. “They think ‘Right to Try’ sounds fantastic and allows access to treat terminally ill patients. How could you not support that? For the most part, the response that we’ve seen is that these laws don’t do much, aside from giving people hope.”

Dr. Bateman-House is also partially wrong. The problem is not that people don’t read the bills. It’s that people don’t understand the anti-patient implications of the bills in terms of insurance coverage, eliminating the right to sue, and the like; don’t understand clinical trials; and don’t understand that it is the federal government, not state governments, who control drug approval and access to experimental drugs. Indeed, when I’m in a cynical mood, I wonder if Goldwater Institute flacks do understand all these things but don’t care because they’re playing a long game designed to weaken the FDA in the name of an ideology that, against all evidence to the contrary, preaches that the free market can assure drug safety and efficacy better than any government agency. Indeed, this intent can be seen in one version of the Goldwater Institute template (and in the Michigan right-to-try law), which changed the term “terminal illness” to “advanced illness,” without really changing the definition. I would not be surprised if, a few years from now, after the majority of states have passed right-to-try, there is a push to open up “right-to-try” to serious medical conditions that are not terminal on the basis of “fairness” and “compassion.” It’s coming. Mark my words.

Finally, there are the issues of safety and false hope. As I’ve said before, as hard as it is to believe, there are things worse than suffering a terminal illness; for instance, suffering a terminal illness and then bankrupting yourself before you die or suffering a terminal illness and then suffering a major complication of an experimental treatment that you have to pay for, thus bankrupting yourself before you die. Now, consider this. The only requirement for an investigational drug or treatment to be made available under right-to-try is that it has to have passed phase I testing and still be in clinical trials (i.e., phase II or III studies). Again, as I’ve described before, this is an incredibly low bar for safety, given that most phase I trials include less than 30 patients and are meant mainly as screening trials to identify the worst side effects and an appropriate dose to use in phase II trials. Yet, as I described before, the Goldwater Institute blatantly describes drugs that have passed phase I testing as having had their safety adequately established. It’s a lie.

Indeed, as is pointed out in the HemeOnc Today article, the risk for toxicity is actually higher in patients who would exercise right-to-try because by definition such patients have to be ineligible for a clinical trial. Remember, clinical trials are designed to minimize risks and maximize potential benefits because it is an ethical imperative in human experimentation, codified in the Common Rule and the Helsinki Declaration. One way they do that is to design the inclusion and exclusion criteria to achieve that end. Moreover, there have been cases where the use of an experimental therapy has become popular based on public pressure related to early evidence.

An excellent example of just what I’ve been warning about for a long time shows up in the HemeOnc Today article citing Dr. Yoram T. Unguru, a pediatric oncologist at the Herman and Walter Samuelson Children’s Hospital at Sinai Hospital in Baltimore and bioethicist at The Johns Hopkins Berman Institute of Bioethics:

In multiple cases, access to an experimental therapy has been expedited due to an early benefit observed in early studies that was not substantiated in subsequent research, Unguru said. One example was the use of autologous bone marrow transplantation in women with metastatic breast cancer, based on preliminary data published in 1995 in the Journal of Clinical Oncology.

“This completely backfired,” Unguru said. “In addition to being poorly designed, the study raises serious ethical concerns and, ultimately, people did much worse, including some who even died. This is why we go through the laborious, lengthy and, at times, seemingly maddening trial phases.”

Although physicians and drug companies are required to report data attained from patients treated through the FDA’s compassionate use program, Right to Try laws do not carry such stipulations.

And, as Colin Begg, PhD, chairman and attending biostatistician in the department of epidemiology and biostatistics at Memorial Sloan Kettering Cancer Center, adds, echoing (again) things I’ve been warning about for over a year:

Eliminating the FDA from the equation may have many significant consequences.

“There is good reason we have the FDA,” Begg said. “The rigorous testing with scientific methods of drugs that come through the pipeline is absolutely essential. Without it, the market would be flooded with drugs that do not work. You would have a cupboard full of drugs that you would want to try, and you would have no idea which one to try because there would be no reliable evidence about the efficacy of any one of them.”

Right-to-try laws may create a precedence for additional changes to drug R&D.

“If we go down this road, there might be a loosening of the standards of drug approval in the first place, and that would be bad for public health,” Begg said. “This movement may ultimately lead to situations where … drugs, in general, would no longer have to go through such rigorous testing to see if they work.”

Unfortunately, what Dr. Unguru and Begg apparently fail to realize is that the libertarian Goldwater Institute cares little or nothing about the difficult balancing of patient rights versus patient safety and societal good that our current clinical trial system tries to maintain, with varying degrees of success depending on the specific situation. An argument, for example, that right-to-try might make it more difficult to recruit patients to clinical trials holds exactly zero water with the Goldwater Institute and most other supporters of right-to-try. Indeed, associated as it is with the “health freedommovement, the goals of the Goldwater Institute’s right-to-try push appear to align quite nicely with the goal of some libertarians to eliminate most of the FDA’s authority because of an ideology, which views any government intrusion into the free market with a jaundiced eye and even believes that the unfettered free market will take care of sorting out safety and efficacy of drugs. We all know how that worked out before the passage of the original act creating the FDA in 1906 and the Kefauver Harris Amendment of 1962 that introduced the requirement that drug manufacturers demonstrate efficacy as well as safety to the FDA before a drug is approved.

Those of us who take care of breast cancer patients remember Dr. Unguru’s cautionary tale from the 1990s. Indeed, the clinical trial publication that fueled the demand for high dose chemotherapy with bone marrow transplant for advanced breast cancer was ultimately retracted. The bandwagon effect is a powerful force affecting politics and even prominent researchers and physicians before the evidence is adequate to recommend a treatment. If this can happen with a treatment as incredibly toxic and risky as bone marrow ablation with high dose chemotherapy followed by stem cell rescue, imagine how easily it can happen with less spectacular examples.

Over a year ago, when the states on the vanguard of the right-to-try movement were first seeing such legislation introduced, I learned the hard way just how willing the movement was to paint its opponents as those proverbial puppy-kicking, American flag burning, cold-hearted “scientists.” Indeed, back then almost the only people I saw routinely speaking out against right-to-try were noted bioethicist Arthur Caplan and little ol’ me, an insignificant blogger. When right-to-try was introduced into my own state’s legislature, my interaction with my state representative, who politely thanked me for pointing out the many problems with right to try, but made it clear through his response that he was likely going to vote for it anyway, showed that, from a political standpoint at least, ethics- and science-based medicine were not likely to prevail in Michigan or anywhere else over the emotional appeal of “doing something” to help terminally ill patients. It didn’t matter whether that “something” will actually do what it promises or not. Later, I met with an advocate of the biotech industry who testified against the bill. He described a scene in which he was the lone expert testifying against right-to-try versus a flack from the Goldwater Institute and patients with terminal illnesses and their families, the latter of whom all glared at him as though he were personally going to execute them or their ill family member. I learned that no one associated with a major cancer center was willing to publicly oppose right-to-try, even though they uniformly thought it was a horrible idea. If I had found out about the hearing in time to have made the trip to Lansing—as I recall, it occurred with little notice and on one of my operating room days—I honestly don’t know if I would have had the wherewithal to do so myself, given the pushback I had received from my previous posts on the matter.

As I said, right-to-try is a con game perpetrated on desperate patients, offering them false hope but instead delivering nothing of value that can’t be obtained under FDA compassionate use programs, as is pointed out by the opinion piece written by Dr. Jeffrey M. Peppercorn, a medical oncologist specializing in breast cancer at Massachusetts General Hospital, in a point-counterpoint forum included after the HemeOnc Today article that asks: Do the changes to the FDA’s compassionate use program eliminate the need for ‘Right to Try’ laws? Dr. Peppercorn takes the “yes” position:

However, the question is not whether promotion of access to promising drugs for patients with terminal disease is justified, but how this can best be accomplished. The same imperative that drives Right to Try laws underlies the FDA’s compassionate use program. The primary difference is that access to experimental drugs through compassionate use programs is regulated in the interest of both the patient and society. Physicians must seek FDA approval before a manufacturer provides the unproven drug, and the rationale for use of the drug, absence of alternatives, informed consent and review by an independent institutional review board must be documented. In addition, toxicities and outcomes after administration must be reported. This process promotes responsible practice of evidence-based medicine — even as the evidence evolves — and provides a chance for monitoring, both of the specific intervention and of the use of experimental therapy more generally. Although the process can be burdensome, the FDA has recently streamlined the application to allow for completion in less than 45 minutes and still allows for rapid approval of emergency access by phone when this is clinically justified.

Exactly.

The key difference between right-to-try and FDA compassionate use programs is that right-to-try strips pretty much all protections from patients who would use it; requires them to pay for the drug and any care related to the drug; prevents them from suing manufacturers and doctors if something goes wrong; prevents the state from taking action against the licenses of providers who give patients bad advice recommending right-to-try; tells insurance companies that, not only do they not have to pay for the investigational agent or device, but they don’t have to pay for any complications arising from use of the investigational agent or device; and makes doctors and other health care providers working for right-to-try states leery of advising too strongly against right-to-try, lest they be prosecuted for “blocking” access to experimental drugs. FDA compassionate use programs, in marked contrast, require review and oversight by an institutional review board (IRB). The other difference was that, although 99.5% of compassionate use/expanded access requests are approved by the FDA, the process was onerous. As Dr. Peppercorn points out, that is rapidly changing, arguably eliminating the “need” for right-to-try. Yet right-to-try marches on, because the reason for right-to-try is not as represented by the Goldwater Institute. Rather, it’s to weaken and ultimately neuter the FDA.

Other pernicious effects of right-to-try

Patients come first, and must always come first, which is why my key objection to right-to-try remains (and will always remain) that it is bad for patients. However, the HemeOnc Today article also points out other problems with the legislation. One is that it presents a major dilemma to industry. Now, I realize that few people are particularly sympathetic to industry, and even we “pharma shills” (at least that’s what right-to-try proponents and those supporting alternative medicine, groups that not-infrequently overlap, call us) recognize that pharma is nowhere near innocent in provoking that reaction. Now that right-to-try laws are metastasizing throughout the US, oncologists are finally taking notice of the alarms that we few have been sounding:

The fact that manufacturers are not liable if a drug obtained through Right to Try fails or causes significant harm may allow pharmaceutical companies to benefit from such legislation, Unguru said.

“The way the laws are written, pharmaceutical companies are under no commitment to release these drugs, but should patients be able to access them, there is almost no consequence in the event of a bad outcome,” Unguru said. “Bypassing the current regulatory system means that some drugs that may not be safe or ready for widespread use essentially get a ‘free pass.’ Some pharmaceutical companies might see such laws as a way to test their drugs in a way they typically would not be able to without being held accountable.”

This would pose significant safety issues to society.

“It is hard to argue that individual patients who are dying and want access to a drug should not get it,” Begg said. “But the concern I have is that the ability of drug companies to market drugs that have not been properly tested is not in the interest of the public.”

The Texas State Senate and House have passed versions of a Goldwater Institute-inspired right-to-try law. The only difference in the two bills is that the House version would allow manufacturers to provide experimental drugs to patients at cost, whereas the Senate version would require that companies that provide such drugs donate them. Assuming the two versions are reconciled and passed and the governor signs the bill, say goodbye to any chance of shutting down Stanislaw Burzynski, as the law would explicitly bar the Texas Medical Board from pursuing its current action against Burzynski’s medical license, given that he could claim his antineoplastons have passed phase I clinical trials and are in phase II, which makes them eligible for right-to-try. Even if the Senate version prevails, Burzynski’s business model of providing his unproven antineoplastons for free but charging big bucks for “case management” fees would remain intact.

Most drug companies are not as unethical as Burzynski, however, which is why most do not support right-to-try and the Pharmaceutical Research and Manufacturers of America (PhRMA) is not supportive, as described in the HemeOnc Today article. Pharmaceutical companies remember incidents like this:

In the past, public pressure has forced pharmaceutical companies to grant access under compassionate use.

Last year, Chimerix denied Josh Hardy — a then 7-year-old boy who developed an adenovirus infection after undergoing a bone marrow transplant for rhabdoid tumor of the kidney — access to the experimental antiviral drug brincidofovir (CMX001). After a social media firestorm — which included death threats to the company’s leadership — Chimerix commenced an open-label phase 3 trial so Hardy could enroll and receive treatment.

“This became publicized, and everyone assumed that if Josh Hardy got brincidofovir he would survive,” Bateman-House said. “He did get brincidofovir, and he did survive. Thomas Duncan, the man who died of Ebola in Texas, got the same drug and died. Chimerix is a small drug company and brincidofovir is its only drug in development, and its stock took a nosedive after Duncan’s death. If it were not for the fact that phase 3 trials were already close to completion, this could have killed the company. If Josh Hardy had died, that could have killed the company.”

In other words:

“It can go either way — you’re damned if you do and you’re damned if you don’t,” Unguru said. “If you release the drug and it does badly, then you’re going to get bad press. If you don’t release it, then you risk being vilified.”

And if the company charges for the drug and things go badly, it will be doubly vilified, even though small pharmaceutical companies often have just enough venture capital to make enough of the drug to do the clinical trials necessary for approval, and releasing drug jeopardizes its ability to do those trials.

Physicians are also put in a bind when a patient has exhausted everything and wants to pursue right-to-try. End-of-life discussions are very difficult to begin with, because, as I’ve pointed out before, no physician wants to be hope’s executioner. Yet, sometimes that is our job, and the best we can offer is palliation. Given that right-to-try theoretically requires less effort than an expanded access exception, there will be enormous pressure on physicians to accede to the wishes of a terminally ill patient to pursue right-to-try even if the physician thinks it won’t work. The option of right-to-try might thus actually provide a physician with an option to avoid the hard discussion that end-of-life care entails and just facilitate the patient’s getting the drug. As Dr. Charles F. Levenback, professor in the department of gynecologic oncology and reproductive medicine at The University of Texas MD Anderson Cancer Center, puts it:

“I’ve heard ethicists say physicians may go in the direction of compassionate use to avoid the difficult conversation about mortality and the limits of what we can provide,” Levenback said. “All of compassionate use is predicated on the physician’s responsibility to be candid about the purpose of treatment — palliative vs. curative — and setting the patient’s expectations correctly.”

Correct. However, some doctors are better at doing this than others.

The track record of right-to-try thus far

Given that it’s now been a year, or nearly so, since the first batch of states passed their right-to-try initiatives, I asked a simple question: Has a terminally ill patient obtained an investigational agent through right-to-try yet? Note that I didn’t even ask whether a single terminally ill patient has benefitted from right-to-try, because that’s much more difficult to ascertain. Doing extensive Google searches, I could not find a single example, although I did come up with a lot of examples of patients expressing hope that such laws would get them access to investigational drugs (like this one). My next thought was that, if anyone would know of a case in which a terminally ill patient has been granted access to an experimental drug under right-to-try, it would be the Goldwater Institute. So I engaged Christina Sandefur, Vice President for Policy, on Twitter thusly:

.@cmsandefur Except that #RightToTry laws don’t really do that. False promise.

— David Gorski (@gorskon) May 6, 2015

I then asked:

.@cmsandefur Has anyone anywhere gotten experimental drug under #RightToTry? It’s been a year now since Colorado. I know of no case. — David Gorski (@gorskon) May 6, 2015

Her response:

@gorskon these laws are just now going into effect,& it takes time to acclimate to overhaul of status quo. Offer to have a real convo stands

— Christina Sandefur (@cmsandefur) May 6, 2015

Which resulted in:

@gorskon Again,I welcome thoughtful,substantive discussion, but I’m not interested in unproductive back-and-forth. You know where to find us — Christina Sandefur (@cmsandefur) May 6, 2015

What’s irritating about this exchange is that I was trying to engage Ms. Sandefur in a “thoughtful convo”—or, at least, as thoughtful a conversation as you can have on Twitter. What is it with people like this who seem to want to try to get me on the telephone to discuss such matters when they can’t manage to engage me online, be it on Twitter, the comments of my blog posts, or even by e-mail, where you can have a really thoughtful conversation? I tend to suspect it’s because they don’t want to leave a “paper trail” (or an “electron trail” in the case of e-mail exchanges) documenting what they actually said. Perhaps I should respond to her that I’d be happy to talk to her on the phone, but only if she gives me permission to record the conversation. (In turn, I, of course, will give her permission to do the same.) In any case, I think it reasonable to assume that, if there were a patient in Colorado—or anywhere else, for that matter—who has successfully obtained an experimental drug under right-to-try, Sandefur would know about it and would not have hesitated to provide links to relevant news stories. She did not. Instead she chose to dodge the question and make excuses. Similarly, Kurt Altman, national policy adviser and general counsel for Goldwater Institute, mentioned no patients who had yet benefited from right-to-try in his “counterpoint” to Dr. Peppercorn’s opinion piece. I know he would have if such a patient existed. Certainly, if I were writing in favor of right-to-try, I would use the examples of such patients if they existed. Others have also noted that there appears as yet not to be a single patient who has obtained an experimental drug through a right-to-try law, much less benefited from it. Indeed, one man moved to Missouri to try to take advantage of right-to-try for his amyotrophic lateral sclerosis and has thus far failed.

Right-to-try laws: Bad for patients

I have little doubt that some version of right-to-try will likely pass in every state in which it has been introduced, which means we could be looking at up to 40 states, possibly more, with such laws by next year. It must be emphasized that the vast majority of legislators proposing such bills and passing them into laws and the patients lobbying for right-to-try do so with the best intentions, believing such laws will help terminally ill patients. These patients, according to mistaken popular belief, have nothing left to lose when in fact they do, even though it might not seem that way. In the idealistic desire to help the terminally ill, supporters of right-to-try either don’t pay attention to or downplay the significant negative aspects of these bills, which permit the loss of insurance coverage, stripping of IRB protections that patients receiving such medications through expanded access programs, the economic injustice in which only the rich or those capable of raising large sums of money could benefit if the drug company was unwilling to provide the investigational drug for free, and the potential additional risk of harm that can come from using experimental drugs outside the rigorous design and protections of clinical trials. Most people are similarly unaware that granting less controlled access to such medications is far more likely to cause an individual patient harm than good. Moreover, liberalization of expanded access programs to vastly decrease the burden of paperwork and effort on the part of physicians and patient has already been placed in draft guidelines, rendering right-to-try unnecessary.

So why are right-to-try laws so popular? In an editorial last year published in JAMA Internal Medicine entitled “The Strange Allure of State “Right-to-Try” Laws“, Patricia Zettler and Henry Greely ask the same question, noting that a recommendation from a physician is no substitute for the evidence of safety and effectiveness that comes from later-phase clinical trials:

So what is the point of these laws? A skeptic might point out that opposing experimental treatments for dying people is unpopular. Patients have publicized—and gained public support for—their efforts to obtain experimental treatments through social media. Lawmakers have little to lose politically by supporting these laws. Companies, seeing their ineffectiveness, have no powerful reasons to oppose them. And libertarians can celebrate an attack on big government. The problem is that all these efforts are unlikely to actually help the patients with life-threatening diseases. Indeed, these laws may be harmful if they draw attention and resources away from efforts to develop effective treatments, engender confusion about the FDA pathway for compassionate use of medications, or create false hopes for terminally ill patients.

All of which right-to-try laws do, and worse.

There will always be a conflict between personal freedom and protecting patients, as well as ensuring maximal societal good. We see this in opposition to school vaccine mandates, support for cancer quackery and dubious stem cell clinics, and, of course, right-to-try. Unfortunately right-to-try laws represent dangerous placebo legislation. They only give the illusion of doing something given that the FDA, not the states, controls drug approval. The reason for their existence is not so much to help patients, but as part of a long game to build a groundswell of support for policies that would ultimately hobble the FDA’s ability to oversee the efficacy and safety of drugs. These laws are bad for patients, bad for doctors, bad for drug development, and bad for science. That’s why going through the states is the wrong way to attack this problem. If we as a society believe that terminally ill patients should have easier access to investigational drugs, then reforming how the FDA handles compassionate use exemptions, not a patchwork of state laws with no teeth, is how it should be done.


ADDITIONAL READING:
  1. The illusions of “right to try” laws
  2. “Right to try” laws and Dallas Buyers’ Club: Great movie, terrible for patients and terrible policy
  3. The Compassionate Freedom of Choice Act: Ill-advised “right to try” goes federal
  4. The false hope of “right-to-try” metastasizes to Michigan
  5. Using the fear of Ebola to promote the placebo legislation that is “right to try”

Elsewhere:

How State Right-To-Try Laws Create False Expectations.

The authors get it:

Putting aside the invalidity of RTT laws and the false hope they create, these laws also fail to address more fundamental health and safety issues. RTT laws seek to grant vulnerable patients access to unproven and potentially harmful drugs or other medical products without any expert safeguards, such as scientific or ethical review by an Institutional Review Board or similar body.

Moreover, these laws undermine the clinical trial infrastructure regulated by FDA, which was developed to ensure that medical products are tested on a sufficiently diverse population in a scientifically sound manner to bring safe and effective products to market. By allowing anyone to obtain an experimental treatment outside the confines of a regulated clinical trial, RTT laws reduce incentives to participate in clinical trials, increasing the complexity of recruiting sufficient study participants.

Further, due to complex manufacturing requirements, there may be only limited amounts of investigational product available, so RTT laws, if they resulted in patients receiving investigational treatments outside of clinical trials, may divert resources needed for those clinical trials. As a result, the trials—upon which FDA approval ultimately depends—may be slowed. Although touting ostensibly laudable goals, RTT laws do not take any steps to navigate the thorny issues raised by use of experimental treatments, including potential delay in getting FDA approved products to the market, where they can benefit the public at large.

19 May 18:36

Loony Sandy Rios: Retrain Bikers To Fight Our 'Real Enemies'

by Karoli
mturovskiy

"A motorcycle movie, I'm not sure the name." but also:
"A man who has blown all his options can't afford the luxury of changing his ways. He has to capitalize on whatever he has left, and he can't afford to admit — no matter how often he's reminded of it — that every day of his life takes him farther and farther down a blind alley... Very few toads in this world are Prince Charmings in disguise. Most are simply toads... and they are going to stay that way... "

Loony Sandy Rios: Retrain Bikers To Fight Our 'Real Enemies'

Sandy Rios is one of those apologists who thinks the motorcycle gangs are no big deal, and easily "retrainable" into some kind of fighting machine to unleash on the likes of "drug cartels and Islamists."

After nine people died in Waco, Texas, during a fight yesterday between rival motorcycle gangs, American Family Association governmental affairs director Sandy Rios noted on her radio show today the “senseless” violence and waste of life.

Instead of letting them fight each other, Rios said, the U.S. government could have just used these gang members to fight drug cartels and Islamists.“Police have their hands full fighting our real enemies, the cartels, the Islamists, and now they’re fighting motorcycle gangs?” Rios asked. “I find myself thinking, let’s have a little retraining for motorcycle gangs and put them on our side fighting our enemies. That’s what we really need.”'

Listen:

Note the veiled racism in her statement about who our "real enemies" are? She left off the reference to "Mexicans" in the drug cartel reference, and black people in the Islamist reference.

read more

14 May 20:47

Hallelujah! I Have Another FBI File! The Next Round Is On Me, Boys!

by Juanita Jean

Well, kiddos, it appears that the FBI has been spying on “environmental extremists” in Houston, Texas.  And the definition of environmental extremist is people who oppose the Keystone pipeline.

I am not kidding.

images-1Internal agency documents show for the first time how FBI agents have been closely monitoring anti-Keystone activists, in violation of guidelines designed to prevent the agency from becoming unduly involved in sensitive political issues.

The documents reveal that one FBI investigation, run from its Houston field office, amounted to “substantial non-compliance” of Department of Justice rules that govern how the agency should handle sensitive matters.

One FBI memo, which set out the rationale for investigating campaigners in the Houston area, touted the economic advantages of the pipeline while labelling its opponents “environmental extremists”.

After The Guardian ran the story, Charles Pierce of Esquire Magazine picked it up and wrote —

… it is fair to conclude that what the FBI and TransCanada really were cooking up was a counter-propaganda operation using the investigative auspices of the FBI. In other words, the FBI office in Houston joined in ratfking the opposition to the pipeline. Gordon Liddy must be weeping for joy.

Okay, so why is the FBI conspiring with a foreign government to screw American citizens who oppose the foreign pipeline?  Oh yeah, they justify it by asserting that the Keystone pipeline is “vital to the security and economy of the United States.”

The hell you say?  It’s not our pipeline.  We don’t even get the oil.  I would suspect it would provide the same level of security as having a giant leaky x-ray machine in your backyard to check for burglars coming over your fence.

So what do we do about the FBI violating it’s own rules?  Two game suspension?

You gotta wonder if they are also monitoring President Obama.

Thanks to Craig for the heads up.

07 May 01:41

Wandering Eye: Martin O'Malley's true crime legacy, the Preakness field takes shape, and more

by By City Paper
The New York Times Upshot blog  goes Long Shadow this morning with an analysis of how much money a person loses by spending just one year of their childhood in a low-income area. The story is keyed to the online reader's area, so locals will see a version that is focused on Baltimore and surrounding counties. "Every year a poor child spends in Howard County adds about $110 to his or her annual household income at age 26, compared with a childhood spent in the average American county. Over the course of a full childhood, which is up to age 20 for the purposes of this analysis, the difference adds up to about $2,200, or 8 percent, more in average income as a young adult." Harford County? Minus $490. Baltimore County? Minus $1,150. The city loses you $4,510 per year in salary, according to the analysis. In "The Long Shadow," Hopkins researchers found something similar, but noted that African-Americans in poor neighborhoods did much worse than even similarly poor whites. This article follows a new study by Raj Chetty and Nathaniel Hendren of Harvard. The researchers look at income mobility for the Equality of Opportunity Project . They're at the point where they suggest that growing up in certain counties causes stunted or enhanced income as an adult. The policy implications are obvious, and already begining, as poor people are resettled in rich areas. The implications for growing Baltimore—which ranked 100th out of 100 in the study for nurturing economic opportunity—are dire. (Edward Ericson Jr.)
05 May 21:20

Op-Alt: The money spent to arrest and prosecute Freddie Gray for nonviolent crimes could have sent him to college

by By Marina Smelyanskaya
In the much-anticipated May 1 press conference Baltimore City State’s Attorney Marilyn Mosby said that Freddie Gray’s arrest was illegal. Freddie Gray should have never been in that van. And the failed policies that have brought Freddie Gray and thousands like him into police vans across this country should have been a part of every media story about Baltimore last week.
02 May 00:58

Why Syriza Failed; Why Europe May Fail With It

by KenInNY
mturovskiy

The Fall of Greece matters cause its a model of institutional collapse that we'll be seeing a lot of in the next couple of years. Pay attention!


Logo of the Greek Golden Dawn political party

by Gaius Publius

I haven't written much about Greece lately, but there's quite a story going on. It's not that difficult to follow, but you have to be careful whom you read. Conventional wisdom (backed by corporate, pro-austerity media outlets here and abroad) says it's a morality tale — bad Greeks who went into too much debt and now they can't pay up. Good German bankers want their money and are reluctant to forgive bad deeds because it might encourage other debt-owing entities to seek relief as well. They're calling that "moral hazard," fear that a bailout might encourage more bad behavior. There must be consequences, or so they think.

The bottom line of those who tell this tale — Greece provides a place for lovers of austerity (like cuts to social programs) to point and sneer. Their refrain, which I'm sure you've heard, is "We don't want to end up like Greece, do we?"

The reality of the Greek situation is different — not hard to understand, just different. Briefly, the Greek back story is a tale of looting, but by elites. Greek elites looted the economy through their control of government and their tax avoidance; American banks like Chase looted Greece by selling them unaffordable swap deals (the link is to Matt Taibbi's great reporting) which masked Greek economic problems, for a while; and at the same time, European bankers poured a ton of hot money into the Greek economy (and that of Spain, Italy, Portugal and other "peripheral" countries) looking for profit in a bubble.

Then the bubble burst in Europe — in Greece, Spain, Portugal, Italy, everywhere the hot money flowed. And now the European bankers, especially the Germans, want to be made whole. Despite the fact that the country is in depression and on the verge of radical political transformation, Greece, in their minds, must pay its debts. Period. 

All you need to know:

▪ The European elites — the European Central Bank (ECB) and the IMF — want to bail out Greek debt so that the Greeks can pay off the Germans and other European bankers. I hope you see that as Europeans using EU money to bail out the banks, because that's what it is. In the same way, the U.S. Treasury bailed out Goldman Sachs by bailing out AIG at 100 cents on the dollar.

▪ But those same European elites want their own money back from Greece, so they're trying to force Greece to agree to "austerity now and forever" until every dime is paid. Greece is being squeezed for every dime, and squeezed hard.

▪ As a result, the Greek government is on the verge of default and the economy is on the verge of collapse.

▪ Because unlike most other sovereign nation, Greece does not control its currency — the euro is controlled mainly by the Germans and their bankers — Greece is also on the verge of leaving the euro and reinstating the drachma, which they can control.

▪ In the last election, Greek citizens elected a political party, Syriza, that promised to fight back against the further destruction of the Greek economy by the big money in Europe.

▪ Syriza is not fighting back. They're trying to be "responsible." (See below for why.)

▪ None of the other Greek political parties are better. Decidedly worse is Golden Dawn, the neo-Nazi party, whom many Greeks are finding a very attractive alternative. (The irony of using neo-Nazis to resist German economic destruction is apparently lost on everyone. Yet that's their logo above. They really are neo-Nazis, with a capital "N".)

Something is about to break, and it could break very soon. If Greece defaults on its government debt, it will send shock waves around the world. If Greece also exits the euro, the consequences will likely be worse, though maybe not worse for Greece.

How Syriza Has Painted Itself Into a Corner

With all of that said, I want to send you to the best analytical article I've read about Greece and the problem facing Syriza. As you'll read, they tried to do something very clever. It didn't work. This comes via Naked Capitalism; please read Yves Smith's excellent introduction to this analysis, then the analysis itself. A taste (my occasional emphasis):
Why Syriza Failed

Yves here. While the path for the ruling Greek government to make a deal with its creditors is fraught, it is pressing forward to try to come to an agreement by the next Eurogroup meeting, May 11. Greece has an IMF payment due May 12 that it will find difficult to meet. With the new urgency and the, um, realignment of the negotiating team, the odds now look to favor Greece capitulating even in the event of a default even if the ruling coalition tries holding ground on some of its red lines like pensions. If a default were to occur, it’s not hard to imagine that the IMF and the ECB would make Greece an offer it can’t refuse: the IMF would reverse itself on giving Greece a grace period for its payment if it relented on the disputed issues, otherwise the ECB would have no choice in light of the default to remove or limit its support under the ELA [Emergency Liquidity Assistance][.] That would force Greece to impose capital controls, nationalize its banks, and issue drachma to [recapitalize] them. Both the Greek public and most Syriza members are opposed to a Grexit [Greek exit from the eurozone]. ...
With those dates in mind, especially May 12, consider the following. Yves printed it in full in her post. I'm including a portion, with the hope that you go to the source and read the rest. As I mentioned above, this is the most enlightened piece on where Greece stands now, and what Syriza has tried (and failed) to do, that I've seen anywhere.
From a Washington DC insider

Syriza Has Created a Beg-ocracy Based on Fear

It’s been two months since Syiza took power, which is enough time to do some sort of evaluation of their governing philosophy. Here’s what we know. When Alexis Tsipras was elected to head the new Greek state, his government promised two mutually exclusive objectives. The first was to stay in the Euro. The second was to repudiate the policies of austerity and the colonial arrangement of the institutions that manage the Euro. Both policies represented different wings of the Syriza coalition, and Tsipras believes both must be placated.

Tsipras’s strategy was not to pick one of these objectives and stick with it to the exclusion of the other, but to attempt to mesh the two of them in an audacious attempt to transform the entire Eurozone.

Tsipras decided to make Greece a demonstration project. When he was elected, he spoke early on of a “European New Deal”, in a nod to Franklin Delano Roosevelt’s new governing arrangements. And indeed, his early legislative attempts included things like ‘food stamps’ and electricity for the poor. His finance minister, Yanis Varoufakis, talked of European-wide investment in infrastructure to boost overall European aggregate demand.

By governing Greece reasonably well and reducing corruption, along with taking money from those who didn’t need it and giving it to those who do need it, they were hoping to show European elites and voters that another way was possible. With the added boost from more European economic activity, Greece could prosper. Certainly it would grow since its base state is so depressed.

In other words, Tsipras and Varoufakis sought to ‘save Europe from itself’ by demonstrating that the austerity policies peddled by European banking elites were tearing Europe apart....

The European project is one of the great achievements of humanity. From the fall of the Roman empire until 1945, [Europe] has basically been one giant warzone, with varying degrees of violence. The EU was essentially an American-brokered marriage between France and Germany. This union was then expanded outwards, with a strong social welfare state undergirding peace and prosperity. This is the EU that they want to save[.] ...
Keep that last in mind. The postwar "European project" is itself an attempt to prevent one more continent-wide disaster. To repeat: "From the fall of the Roman empire until 1945, [Europe] has basically been one giant warzone, with varying degrees of violence." And: "Tsipras and Varoufakis sought to ‘save Europe from itself’ by demonstrating that the austerity policies peddled by European banking elites were tearing Europe apart."

But it's not working:
Nevertheless, the EU has been inverted. It is now a set of actors going through a set of austerity policies that in geopolitical terms reflect the Saw horror films, sadistic conditions imposed by bankers and Eurocrats who just enjoy the torture. America is absent. Germany is dominant and malevolent, both corrupt and self-pitying. Nationalism and greed are increasingly rampant, with fewer and fewer institutional controls. It is in this environment that Syriza leaders are trying to negotiate what are essentially fiscal transfers in a structurally deficient currency union that has been organized to suck wealth from the periphery and transfer it to German banks.
Which leaves Syriza holding the bag. As the writer says:
What this means is that Tsipras and Varoufakis are now effectively working for bankers. [emphasis in original] They do not want to govern with an independent power base, they do not believe in governing along the lines of what they promised unless it is easy to do so, and they are organizing their governing apparatus as a beg-ocracy. ... It’s been two months straight of negotiations, which looks more and more like begging, and they have had no time to take control of the bureaucracies or to pay attention to what is going on in any area except the immediate political situation. The Greek economy is not improving, because the uncertainty has impeded what little commerce there was. ...

Syriza leaders ... are not bad people, and in ordinary situations, they might even be good leaders. But the strategy being pursued is bad and their attitude based on being afraid of the Europeans is worse. This is a fight over power, and Greek leaders simply aren’t willing to advocate for their own people in any serious way. They are deluding themselves about who they are up against. ...
I'll point you to the rest, and to the writer's bottom line. Syriza tried to save both Greece and Europe, at least by this analysis (one I think is essentially correct). It looks like Europe, driven by the culture of greed and by German elites, doesn't want to be saved. Like the hyper-rich everywhere, Europeans just want their money.

There's an inherent risk in lending, but they don't want to assume those consequences (talk about the "moral hazard" of never facing consequences). European bankers are doing everything in their power to "make themselves whole," but it's not going to work. And in my estimation it's going to not-work very soon. I agree with the writer: "Time’s about up."

I'm putting this up so what happens next won't catch you by surprise. TPP is the biggest hot story in the country right now, and rightly so. But the slow death of Greece, and potentially the "European project," is the biggest cold story, the one you hear nothing about. Until you do.

The world is collapsing because of greed and the unwillingness of those with billions to part with a dime. People are in debt because they're broke. Breaking them further just brings us closer to this. It's not dark yet, but it's getting there. Stay tuned.

GP



01 May 21:54

Quick change of mind on social issues

by Nathan Yau

Pace of Social Change by Bloomberg

As Supreme Court hearings for same-sex marriage start today, Alex Tribou and Keith Collins for Bloomberg look back at timelines for past social issues, such as interracial marriage and abortion.

Each line represents an issue, and the height shows the number of states that removed the ban each year, so you end up with lines that increase slowly, and then there's a sudden jolt upwards that ends in federal action. Note the quick increase over just a few years with same-sex marriage. Marijuana legalization on the far bottom right is getting started.

Scroll down the page for more details on each issue, with moving lines that provide a sense of change and the now familiar gridded state maps filled over time.

Tags: Bloomberg, marriage

01 May 18:21

Parrot’s First Solo Muni Ride?

by eugenia

white parrot muni

New important word in parrot vocabulary: “Back door!”

This parrot is riding Muni backwards like a total pro. We don’t see the parrot’s human companion nearby, and judging from the confident stare on the bird’s face, he’s got this whole urban transit thing down. Thanks to @audlaq for getting a photo of this intrepid Muni rider.

Oh, by the way, here’s another parrot (the same parrot? Its cousin or twin?) riding the LRV in a sporty little vest, and then again in a fashionable casual sweater.

Can’t get enough? Here’s the whole Muni zoo!

30 Apr 18:52

Bad Company

by EverydayBlues
30 Apr 18:52

Thinking About You

by EverydayBlues
30 Apr 18:36

Georgia pastor defends death to gays sign: Don’t change marriage for ‘people who deserve not to live’

by Travis Gettys
mturovskiy

What are those silly Christians up to now; attacking the rights of gays?

An anti-gay Georgia pastor defended a sign outside his church calling for the execution of LGBT people. The Ten Commandments Church in Milledgeville is known for its hateful messages about homosexuality, but neighbors said the church’s latest sign had crossed a clear boundary, reported WGXA-TV. The...
30 Apr 18:31

Missouri Satanist: 72-hour waiting period for abortions violates my ‘sincerely held religious beliefs’

by Travis Gettys
mturovskiy

What are those silly Satanists up to now; defending the rights of womyns?

A Missouri Satanist plans to challenge her state’s 72-hour waiting period for abortions by claiming the delay violates her religious beliefs. The woman, identified only as Mary by her local Satanic Temple, said she regards the waiting period as “a state sanctioned attempt to discourage abortion”...
29 Apr 22:33

Here’s A Map Of The Most Racist Places In America, According To Google Searches

by John Prager
mturovskiy

“Results from our study indicate that living in an area characterized by a one standard deviation greater proportion of racist Google searches is associated with an 8.2% increase in the all-cause mortality rate among Blacks,”

Racism is alive and well in America, as Google searches reveal.
29 Apr 22:26

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29 Apr 20:22

AND THEREFORE THE DEFINITION OF "AMERICAN" IS ... WHAT?

by Steve M.
At Breitbart, John Nolte is looking at the problems of America's inner cities and is washing his hands of them, Pontius Pilate-style. There's nothing odd there -- nearly all right-wingers do that. To them, either everything is fine now in the non-white parts of America (which doesn't stop those damn malcontents from grumbling) or everything that is wrong is the grumblers' own damn fault (usually because the grumblers' are on the "liberal plantation," which is the main point of Nolte's rant). Nothing noteworthy here. It's just standard-issue contemporary right-wing invective.

But let's not miss the implication of Nolte's headline:



His argument is that Baltimore is having problems because it's been run by Democrats for decades. But he doesn't say that Baltimore is a problem only for those Americans who are members of that Democratic Party. No: the way he puts it is that if something is the Democrats' problem, it's not a problem for America -- implicitly, because Democrats aren't Americans. According to Nolte, America has no responsibility for, or interest in, what happens in Democratic strongholds, except to shield Americans (an exclusively non-Democratic group) from the work of Democrats (an exclusively non-American group).

Thus, Nolte writes:
Contrary to the emotional blackmail some leftists are attempting to peddle, Baltimore is not America’s problem or shame. That failed city is solely and completely a Democrat problem.... Democrats and their union pals have had carte blanche to inflict their ideas and policies on Baltimore since 1967, the last time there was a Republican Mayor....

Every single member of the Baltimore city council is a Democrat....

Democrats and their never-ending grievance campaigns; their never-ending propaganda that government largess is the answer; their never-ending caves to corrupt unions; their never-ending warehousing of innocent children in failed public schools -- that’s a Democrat problem, not America’s problem.
If I were to argue that illegal border crossings are a Southern and Southwestern problem, not America's problem, or that tornadoes are a heartland problem, not America's problem, it would sound ridiculous -- of course we have to care about these things as a nation because, yes, we are one nation.

But conservatives don't think like that. To them, they're Americans. We Democrats aren't, and the mostly Democratic residents of Baltimore aren't -- at least not until we all regain our senses and become conservative Republicans.

****

And I'm ignoring the fact that the makeup of the government of Ferguson, Missouri, at the time of its unrest gives the lie to Nolte's linkage of Democratic governance with unrest.
23 Apr 14:12

In Brief: Two Paragraphs That Show You What It's Like to Be Poor in America in 2015

by Rude One
1. From "This Is What Poverty in Jamestown, Tennessee Looks Like" by Scott Rodd:

"'I know older people on Social Security that draw $575 a month,' she said, shaking her head. 'You can’t survive off that. So a lot of them have no choice but to sell their pills to supplement their income.'"

By the way, the median income of people in Jamestown is $12,800 and 56% of the population lives under the poverty line. The article talks about the wretched living conditions of people on Sunshine Lane, a street in the town. Google Street View stops at the edge of it. Jamestown is close to Big South Fork National River and Recreation Area, one of the prettiest areas of the Eastern United States.

2. From "Texas Sends Poor Teens to Adult Jail for Skipping School" by Kendall Taggart and Alex Campbell:

"She was booked into jail again, and after a restless night she was once again brought in front of a judge to find out how long she’d be behind bars — and how many days of school she would miss. It came down to how much she owed in fines. For four truancy charges and four charges of failure to appear, she owed $2,729. Her mom was unemployed at the time."

The whole article is filled with stories of kids skipping school. Remember when that was something we laughed at and dismissed? Remember how kids used to be sent to detention or suspended or, in the worst case, expelled for it? Public schools have successfully criminalized students and deputized teachers and administrators. If you're middle-class, you can negotiate your way out of a great deal of the grief. If you're poor, you are subject to the whims of a justice system that seeks to punish you for existing.

At some point, we're going to have to do something about how we treat the poor in this country. If the nation doesn't, if politicians continue to ignore the issue of poverty, the poor might just realize that all those guns the NRA has guaranteed they can bear might have another use.  And the United States will have no one to blame but itself.
17 Apr 22:04

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09 Apr 19:03

Walker's War On Academia Causes Preemptive Brain Drain

by capper
mturovskiy

Education funding; what's that/who needs it???

Walker's War On Academia Causes Preemptive Brain Drain

When Scott Walker came out with his presidential campaign state budget, one of the things that caused the biggest and longest outrage was his War on Academia. First, Walker proposed cutting $300 million from the University of Wisconsin budget, saying that professors just need to teach more classes.

He also proposed doing away with the Wisconsin Idea, the driving philosophy behind the university system, which is that their work should benefit everyone in the state. Walker later called it a "drafting error," which was proven to be another one of his lies.

Even though his budget has not been approved by the legislature yet, much less implemented, it is already having negative effects. Namely, chasing away some of the nation's top researchers, such as Anne Sales:

read more

09 Apr 18:59

IL Republican Gov Cuts Autism Funding -- On World Autism Day

by Susie Madrak
mturovskiy

Mental health funding; what's that/who needs it?

IL Republican Gov Cuts Autism Funding -- On World Autism Day

It's like I say: Never, ever, ever, EVER vote for a Republican:

CHICAGO (WLS) -- State funding cuts are threatening services for people living with autism, as families who receive help through a program called the Autism Project say they will be devastated by its elimination.

The Autism Project says Gov. Bruce Rauner confirmed the decision to cut funding for the remainder of the 2015 fiscal year Thursday - on World Autism Day.

Advocates say for every dollar Illinois spends on its best-in-the-nation autism assistance programs, $7 are either earned or saved. So they say cutting well-honed programs that are doing right by their clients is at best misguided - if not plain cruel.

Timotheus J. Gordon is working on his masters in fine arts from IIT, something he never dreamt was possible without the help he got from the Illinois Autism Project (TAP).

"Where else can I go to get help?" Gordon said.

Parents, advocates and administrators say all the progress Illinois has made in the last quarter century, helping people like 27-year-old Jason Vines reach their potential, will be shattered without state funding.

"Our children don't have friends, we do first responder training, my husband has set up a men's support group," said Debra Vines of The Answer Inc., a support group.

Help for autism is not covered under Medicaid.

01 Apr 18:48

Indiana: Where You Can Go to Prison for a Poorly-Timed Miscarriage

by Rude One
Oh, sweet people of these United States, the Rude Pundit cannot express how much he loathes Indiana. He lived there for a good seven years, and it is like the third nipple of his life story: weird, useless, and aesthetically displeasing to all but the most perverse.  Imagine charming middle America, and then fill it with shit - shitty people, shitty landscape, shitty food, shitty big events, just shit. And then make sure that the people not only don't care that they're shitty, but they love it. They just love all the shit and wallow in it and coat themselves in it and elect the shittiest of themselves to lead them and then pretend to be shocked, just shocked when something shitty happens, which just makes them even shittier than they were in the first place, which was pretty damn shitty.

That's Indiana. Its license plates should read, "Scat Fiends' Paradise."

This has been a terrible week or so for Hoosiers (let's not get started on the utter and complete stupidity of that word). Most of the country is pissed off that the legislature passed and Governor Mike Pence signed into law something that quite clearly and by design was written specifically so that fundamentalist Christians didn't have to serve gay people. Then everyone was pissed because Pence kept denying that the law that was created to legalize discrimination against the LGBT community was created to legalize discrimination against the LGBT community. Get ready for the backlash to the backlash, where all the people who really want to discriminate against the LGBT community get all pissed off that they might not be able to do so.

But if you want another dose of uncut Midwestern fucknuttery and blatant cruelty masking enormous injustice, look no further than northern Indiana. No, not the poverty-stricken hellhole of Gary. Further east, in the Granger/Mishawaka area. The Rude Pundit told you in February about Purvi Patel, an Indian-American woman who was scared of her strict Hindu parents because she got pregnant from sex outside of marriage. When she miscarried the fetus, she tossed it into a dumpster behind her family's restaurant. She was arrested and found guilty of both feticide and child neglect.

Yesterday, she was sentenced to 20 years in prison because she didn't handle her miscarriage in the way that the state of Indiana believed she should have. She could have been given a suspended sentence or house arrest because, you know, she was kind of fucked up by the whole situation, but the prosecutor in St. Joseph County wanted to send a message to women: Your fetus is more important than you.

At the trial, the prosecution couldn't prove that the fetus had lived outside the womb, couldn't prove that Patel had taken the abortifacients she had ordered online but said she never ingested, and couldn't establish the actual gestational age of the fetus to show whether or not it could have survived the miscarriage. That didn't matter. What mattered was that Patel wrapped the body in plastic in a panic and dumped it. Then she went to the hospital for severe vaginal bleeding.

Patel is the first woman in the United States to be sent to prison for feticide. And with the number of Indiana clinics performing abortions dwindling down to possibly just two in the entire state, the burden on women who want to end their pregnancies will be greater.  So if a woman tries to abort her fetus herself (and there's no real evidence that Purvi did that), instead of compassion and outreach and counseling and forgiveness, Indiana is saying, "Lock the bitch up."

Stay shitty, Indiana.  Who are we kidding? Of course, you will.
01 Apr 18:34

You People Need To Quit Having Sex. It’s Making Stuart Crazy.

by Juanita Jean
mturovskiy

Fix the roads? Hire more teachers?
NO!
NOT WHILE THERE"S PEOPLE HAVING SEX!

It just passed.

Texas has the third highest rate of HIV infections in the country, but that didn’t stop lawmakers from passing an amendment that defunds HIV/STD prevention programs Tuesday. The amendment to the House budget proposal—offered by Rep. Stuart Spitzer (R-Kaufman)—diverts $3 million over the next biennium to abstinence-only sexual education programs.

Texas receives more federal funds for abstinence-only education than any other state so a Democrat asked bygawd how much money do you need for abstinence-only education.  We’re already #1.

2885The bill’s sponsor, Republican Stuart Spitzer responded —

Spitzer responded that additional funds are needed as long as people are still having sex before marriage.

Well hell, let’s just give them all Start’s money.  No, seriously. He said that.

So what we need to do is to scare more people about sex so they will grow into happy, empathetic adults like Ole Stuart.  Stuart says that he was a virgin until he married his wife at age 29.  I’m gonna guess that wasn’t because of lack of trying.

And since gay people cannot marry in Texas, maybe they should go find out if Stuart’s wife has sex after marriage.

By the way, Texas has the highest teen pregnancy in the whole damn nation.

 Thanks to Karl for the heads up.

30 Mar 18:38

Stuck In The Daily Grinder

by Zandar
mturovskiy

Bootstraps! Freedom! USA!!! USA!!

WaPo Wonkblogger Chico Harlan introduces us to Right-to-Work minimum wage America.

Shanna Tippen was another hourly worker at the bottom of the nation’s economy, looking forward to a 25 cent bump in the Arkansas minimum wage that would make it easier for her to buy diapers for her grandson.When I wrote about her in the Post last month, she said the minimum wage hike would bring her a bit of financial relief, but it wouldn’t lift her above the poverty line.

She called me the other day to say she didn’t get to enjoy the 25-cent hike for long. After the story came out, she says she was fired from her job for talking to the Post.

I spend a lot of time writing about people at the low end of the economy, and I see up close how narrowly they get by day-to-day. In this case, writing about Tippen’s plight may have made her situation worse.

Tippen says she was fired by her boss, hotel manager Herry Patel. Earlier that day, Patel had called the Post to express frustration that he had been quoted giving his opinion about the minimum wage hike. (He objected to it.)

It was soon after, Tippen says, that Patel found her in the lobby and fired her.

“He said I was stupid and dumb for talking to [the Post],” Tippen said. “He cussed me and asked me why you wrote the article. I said, ‘Because he’s a reporter; that’s what he does.’ He said, ‘it was wrong for me to talk to you.'”

So unless there’s an Arkansas law that forbids people from getting fired for talking to a Washington Post reporter, Ms. Tippen is basically screwed.  It used to be that collective bargaining and unions would give a worker a fighting chance against situations like this.

Those days were effectively over before I left elementary school and St. Ronnie rid the Shining City on the Hill of air traffic controllers.

Oh well, her fault for being poor, right? If she was a worthy human being, she would have worked her way up to hotel franchise owner.

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28 Mar 23:21

Hopkins sociologists' study 'The Long Shadow' demonstrates the devastating link between race and poverty, but offers few answers

by By Edward Ericson Jr.
A ground-breaking study by Johns Hopkins sociologists Karl Alexander, Doris Entwisle, and Linda Olson has been on bookshelves for nearly a year, but “ The Long Shadow: Family Background, Disadvantaged Urban Youth and the Transition to Adulthood” is particularly relevant now in light of a much splashier book published two weeks ago by Harvard professor Robert Putnam, whose “Bowling Alone” study made his a household name in the 1990s. Putnam has the ear of President Obama. His subject matter is very similar to that of Alexander: how class-based privilege and opportunity (or lack of same) are transmitted across generations.
27 Mar 18:57

Left, Go Right At The Right Over Rights

by Zandar
mturovskiy

If someone's religious belief is to hate people, then maybe its not the place of the State to sanction that? Just maybe?

We’ve talked about Indiana’s “religious freedom” bill allowing people to not face penalties for discrimination against LGBTQ folks based solely on belief, so when similar legislation came up in front of the Georgia House of Representatives this week, one Republican bravely stood up and killed it with truth.

As in Indiana, proponents of Georgia’s bill have tried to argue that it has nothing to do with discrimination. Rep. Mike Jacobs, an LGBT-friendly Republican, decided to test this theory by introducing an amendment that would not allow claims of religious liberty to be used to circumvent state and local nondiscrimination protections. Supporters of the bill, like Rep. Barry Fleming (R), countered that the amendment “will gut the bill.” Nevertheless, the House Judiciary Committee approved the amendment with a 9-8 vote, three Republicans joining the Democrats in supporting it.

Fleming moved to table the amended bill, a motion that passed with 16 votes, making it unlikely the bill will proceed before the legislative session ends. With an exception for nondiscrimination protections, the “religious liberty” bill is dead.

Before the vote, the bill’s sponsor, Sen. Josh McKoon (R), joined the hearing to similarly argue against making an exception for nondiscrimination protections. He claimed that the bill’s religious liberty protections would no longer be “uniform” across the state, adding, “That amendment would completely undercut the purpose of the bill.” Rep. Roger Bruce (D) pressed McKoon: “That tells me that the purpose of the bill is to discriminate.” Without further explanation, he countered, “It couldn’t be further from the truth, no sir.”

Well played, Mr. Jacobs.  Well played indeed.

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26 Mar 18:48

And Now, A Little Cheerful News...

by driftglass
mturovskiy

Oooooh Ready Player One is a pretty swell read, excited for the movie.




Steve Loves the ’80s: Why It Makes Perfect Sense That Spielberg Is Bringing ‘Ready Player One’ to the Big Screen

As reported by Deadline, semi-well-known movie director Steven Spielberg — auteur of such cult art-house flicks as JawsE.T. the Extra-Terrestrial, and Saving Private Ryan — has signed on to direct the film version of Ernest Cline’s 2011 video-game dystopia novel Ready Player One. It’s a sublime pairing of director and source material for several reasons, not the least of which is that this marks, as far as I can tell, the first time in history that a book that mentions a particular filmmaker has been adapted for the screen by said filmmaker. And if it’s not the first time, such an event is at least exceedingly rare. I mean, I Googled it and asked two very knowledgeable people, and they couldn’t remember such a thing having happened before.
Ready Player One is set in a near-future, economically destitute, ecologically ruined United States. The only escape from the drab and dire existence of daily life is the OASIS, a fully realistic and massive online realm encompassing platforms for every conceivable human activity, with the exception of eating and excreting...

Ready Player One was one of the, well, funnest SF novels I had read in a long time.  It has all the elements I loved about golden age SF -- big ideas, terrific pacing, epic sweep, vile villains, underdog heroes -- and the humane, non-Pollyannish, open-heartedness I loved about some of the best of the New Wave SF from the 60s and 70s.  

And unlike some unfilmable SF epics, RPO was made for the big screen, and Speilberg was made to put it there.


driftglass
24 Mar 18:22

None Dare Call It Treason

by Juanita Jean

Okay, this takes the cake.

You cannot call the Wall Street Journal a liberal media source.  Well, I guess you could, but people would snicker at you.

They have a story today that ought to be ringing a few more bells than it has.

Closeup-BoehnerSoon after the U.S. and other major powers entered negotiations last year to curtail Iran’s nuclear program, senior White House officials learned Israel was spying on the closed-door talks.

The espionage didn’t upset the White House as much as Israel’s sharing of inside information with U.S. lawmakers and others to drain support from a high-stakes deal intended to limit Iran’s nuclear program, current and former officials said.

The bottom line is that Israel spied on United States diplomatic negotiations and fed their biased interpretation of those negotiations to members of congress.

Have you been looking for treason? This one stands out like a possum in a poodle show.

Israel is denying it happened.  I think we need John Boehner’s orange butt sworn under oath before a special Senate committee and watch him perjure himself.  Yeah, John, it looks like manner, smells like manure, tastes like manure but it’s custard pudding, right?

This whole deal smells like 50 cents a gallon perfume.

 

23 Mar 18:12

Indiana Shows Us How GOP Priorities Will Kill Us All

by Rude One

That is an explosion coming out of a manhole at around 6:45 this morning in downtown Indianapolis, Indiana. It's one place where the NCAA College Basketball Tournament is taking place. In fact, several explosions were reported around downtown, blowing out manhole covers. Indianapolis Power and Light Company has assured the public that this has nothing to do with aging infrastructure. Oh, no. It's about electrical cables and the weather. Just like on Monday.

Oh, yeah, right. Probably should mention here that another explosion occurred on Monday. That was caused by a 35 year-old transformer "malfunctioning," which is totally not infrastructure.

As the city gears up for the games of the Final Four, IPL can't guarantee that more explosions won't occur when thousands of fans are in the streets: "When dealing with a large underground electrical system, incidents like Thursday's are a matter of science and 'the laws of physics will prevail,' said Joe Bentley, senior vice president of customer operations at IPL." Ah, physics. Who can tell what wacky things happen because of its laws?

Speaking of laws, the Indiana General Assembly is meeting to decide on some new laws. No, not about upgrading or improving the electrical grid or the infrastructure or whatever is causing the fiery, smoky explosions in the middle of downtown Indianapolis. There's something far more important that needs the attention of the legislature: making sure that no one has to provide services to fags and dykes.

Sorry, wait, that's an unfair description of the Religious Freedom Restoration Act. Like such measures in other states, it allows businesses, churches, anyone, really, from violating their religion to bake a gay cake. If you feel your "exercise of religion has been substantially burdened, or is likely to be substantially burdened" by putting together a nice bouquet for a lesbian couple, you can refuse and no one can do anything about it or you can sue.

The bill passed through its first test, the House Judiciary Committee, on Monday. A few hours later, the transformer blew out underground near the Capitol, filling the streets with smoke. Last August, a series of transformers exploded, closing down another part of the city. Just like in 2013, 2012, and 2011. Those manhole covers just keep bursting out at all times of year. Someone is gonna get killed.

But at least preachers won't have to marry those gay guys.

(Thanks to John K., the long-lost Rude Two, for the heads up on the stories.)
22 Mar 16:10

depressioncomix:depression comix - 229 - View Site - View...



depressioncomix:

depression comix - 229 - View Site - View Patreon

Commentary: I was pretty shocked to wake up and find that this comic had passed 3000 notes in 24 hours – it’s been quite a while since something I did caught like that. And what makes me super happy about that (no offense, Josh) is that the main character is a Person of Color, and yet so many people identify with his struggle. Thank you.

I also identify with this a lot. One way I feel about it is relevant to what I do here. I’ve been doing webcomics since 1997, and never have I ever been able to promote what I do. Just the idea of advertising, promoting, or selling what I do gives me the shivers, since deep down I feel like everything I do is shit. This feeling derailed my previous comics but somehow I have kept this one going. But whenever anyone asks me to step up and make a book or something, the words in the last panel come to the forefront and it’s impossible for me to think that a book about depression comix or previous work would actually be something worth doing. I suck, these comics suck, there is so much better out there … why would anyone bother with this?!? I had to have my arm twisted to set up a Patreon, getting me to get beyond my self-esteem issues and set up a kickstarter or something feels like it would require a miracle. And this is just for comics, this deep feeling of worthlessness has affected my love life and work and everything. And seeing people pass by me in all these areas just proved to me that I didn’t deserve anything good ever, and I began to resent myself for failing when it was because I couldn’t even convince myself to try.

You still reading after that blast of negativity? Wow. But this got over 3000 notes so quickly so it’s not just me thankfully. Thank you for telling me it’s Not Just Me.

18 Mar 02:04

Brokeass Gourmet: Marinated Goat Cheese

by By Gabi Moskowitz
I live for food TV. Ted Allen on “Chopped” is reason enough to spring for cable (or, um, to ask sweetly to “borrow” your parents’ Comcast login). You can keep your Angelina Jolies and Brad Pitts—the celebrities who make my heart skip are the Alex Guarnaschellis, Tom Colicchios, and Michael Voltaggios of the world.