California Governor Vetoes “Right to Try” Bill That Would Let Profiteers Prey on Terminally Ill

This week, California Governor Jerry Brown vetoed a bill, AB 159, that would have allowed terminally ill patients to access experimental treatments that have not yet been approved by the FDA.

Although advocated for as allowing freedom and choice for individuals facing , so-called “right to try” bills allow patients access to dangerous drugs whose safety is not yet proven, and clear the way for profiteers and alternative medicine practitioners to wring money—often hundreds of thousands of dollars—out of the dying and their desperate families, all without any legal protection.

From the San Jose Mercury News:

“Patients with life threatening conditions should be able to try experimental drugs, and the United States Food and Drug Administration’s compassionate use program allows this to happen,” Brown wrote in a signing message to lawmakers. “Before authorizing an alternative state pathway, we should give this federal expedited process a chance to work.”

[…]

“The bill was opposed by the Association of Northern California Oncologists, who warned that providing unregulated treatments for people desperately trying to extend their lives takes advantage of their frailty.”

Lamenting the “cruel sham” that is “right to try” legislation, surgical oncologist David Gorski details the misunderstandings that sustain them:

Basically, right-to-try laws all follow the same template provided by a libertarian think tank, the Goldwater Institute. The idea is to make it easier for terminally ill patients to access experimental drugs and devices. The requirements are risibly low and betray a total lack of understanding of how drug development works in that they only require that the experimental drug (1) have passed phase I trials and (2) still be in clinical trials. Of course, phase I trials are not designed to test efficacy. Their purpose is to work out optimal dosage, identify the maximal tolerated dose, and identify major side effects. Worse, they usually only consist of a few tens of patients, often less than 30. To propose letting seriously ill patients drugs that have been tested in so few people and not demonstrated to be efficacious and safe is to invite disaster. In addition, they provide no financial support for patients, who are basically on their own when it comes to paying what can be the substantial financial charges. In addition, right-to-try laws strip away patient protections, making it virtually impossible for a patient injured using such a drug to sue either the drug company or the physician administering the drug. That’s even leaving aside the fact that drug approval is controlled by the federal government, and drug companies will be highly reluctant to offer such drugs without the approval of the FDA, and the FDA already has programs for single patient INDs, also known as compassionate use, to allow patients access to experimental drugs.

Over the last year and a half, state legislature after state legislature, believing, based on the dishonest propaganda of advocates who claim that the FDA is killing people and the Goldwater Institute cynically featuring the sympathetic stories of dying patients (particularly those with Lou Gehrig’s disease) to advance its agenda, has fallen under the spell of right-to-try. It passed in Michigan last year, sneakily pushed through the legislature. Over the last year, state after statepassed these ill-advised laws. Not surprisingly, several months ago and more than a year after the first of these laws passed, right-to-try advocates couldn’t point to a single patient helped by these laws, and even patients were starting to realize that they’ve been sold a bill of goods in the name of an antiregulatory fervor to weaken the FDA, which was the real reason all along for these laws. The Goldwater Institute just used terminally ill patients to lobby state legislatures, that and the fact that most people don’t understand drug development and think that the arguments for right-to-try sound reasonable because of it. It’s no wonder that patients feel betrayed and disappointed. Right-to-try laws, by their very design, create false expectation and false hope.

Because of the widespread misunderstanding of drug approval (specifically the primacy of the FDA over any state law) and the lack of attention paid to the patient-hostile provisions of the Goldwater Institute template for right-to-try laws that strip away legal protections and greatly weaken the right to legal recourse in the case of harm, these laws have passed 24 states. California would have been the 25th.

[…]

In actuality, given the small proportion of drugs that make it successfully through the whole regulatory process after phase I, patients with terminal illnesses are far more likely to be harmed then helped by releasing experimental drugs that have only passed phase I trials. The frequent retort is that these patients are terminally ill and things can’t get worse, but there is something worse than being terminally ill. It’s being terminally ill and exhausting the last of your finances and even going into debt. It’s being terminally ill and harming yourself so that your are less able to do what you want to do in your short remaining time. It’s being terminally ill and dying sooner than you have to.

Read his full post here.

 

 

Faith-healing Oregon Parents Have Manslaughter Conviction Upheld

An Oregon couple who refused to take their premature newborn to a hospital, and instead prayed over him as he died, have had their manslaughter conviction upheld by the Oregon Supreme Court.

From the New York Daily News:

In their failed plea to the Oregon Supreme Court, the Hickmans claimed that the state had the burden to prove the couple knew their religious beliefs would cause the death of their child.

The state Supreme Court’s decision recounted the minimal steps the Hickmans took to try to save the baby. If they had taken David to a hospital, there is a 99 percent chance he would have survived, a doctor testified at the trial.

“Dale ran into the room where one of his aunts was holding David and anointed David’s head with olive oil and began to pray,” the Oct. 8 state Supreme Court decision read. “He noticed that David was taking short breaths, was minimally responsive, and was lighter in color, so he took David into the bedroom where Shannon still lay. At that point, it was ‘in the back of [DALE’S] mind’ that David would not survive. He sat in a chair by the bed, held David in his arms, and prayed.”

The main cause of David’s death was staphylococcus pneumonia, the coroner said.

During the trial, both parents testified that “they would not have done anything differently.”

Read the full article here.

California Governor Signs Bill Legalizing Physician-Assisted Dying

We have some breaking news to share from Patrick McGreevy of the Los Angeles Times:

Caught between conflicting moral arguments, Gov. Jerry Brown, a former Jesuit seminary student, on Monday signed a measure allowing physicians to prescribe lethal doses of drugs to terminally ill patients who want to hasten their deaths.

Approving the bill, whose opponents included the Catholic Church, appeared to be a gut-wrenching decision for the 77-year-old governor, who as a young man studied to enter the priesthood.

In considering it, Brown said he had to “reflect on what I would want in the face of my own death.”

California becomes the fifth state to allow so-called assisted suicide, following Oregon, Washington, Montana and Vermont.

You can read Gov. Brown’s signing statement here.

California: Tell Gov. Brown to Sign Bill Legalizing Patient Choice at End of Life

An action alert from the Center for Inquiry’s Office of Public Policy:

The California legislature has just approved a bill that would legalize physician-assisted dying, and the Center for Inquiry (CFI) urges you to contact Gov. Jerry Brown right now and urge him to sign this measure into law. 

Senate Bill 128, the End of Life Option Act, would authorize “an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal illness, as defined, to make a request for medication prescribed pursuant to these provisions for the purpose of ending his or her life.” The bill would also establish procedures for making these requests.

Many people who are terminally ill want the option of meeting their death on their own terms, so that they can spare themselves and their families needless suffering. CFI firmly believes competent, terminally ill patients have a right to determine whether to prolong their life or hasten their death. Accordingly, CFI strongly supports legislation that authorizes physician-assisted dying.

However, adamant and well-financed opposition from religious institutions — especially the Catholic Church — has frustrated such efforts. We believe that at the end of a person’s life, no one else’s religious views should affect their medical care, including how or when they choose to die. Our lives don’t belong to any church, politician, or cultural tradition. Our lives are our own.

Five states have already authorized physician-assisted dying: Oregon, Washington, Montana, Vermont, and New Mexico. With your help, California could become the next.

You can take action here.

Legal case tests religious hospitals’ right to deny procedures

As reported in the San Francisco Chronicle:

Rachel Miller, due to have her second child in late September, agreed with her husband that this would be her last pregnancy and decided she would be sterilized by tubal ligation after giving birth. But her hospital in Redding, owned by Dignity Health in San Francisco, refused to allow her doctor to perform the procedure, saying tubal ligation violates the ethical principles of Catholic health care facilities.

Now Miller’s case could become the springboard for a legal attack on barriers to reproductive procedures — other than abortions — at Catholic hospitals in California, whose numbers are steadily increasing.

“Hospitals that are open to the general public and that receive state money shouldn’t be able to use religion to discriminate or to deny important health care,” said Elizabeth Gill, an American Civil Liberties Union attorney who represents Miller. She said the hospital receives state Medi-Cal funds as well as federal funding from both Medi-Cal and Medicare.

In an Aug. 17 letter to Mercy Medical Center in Redding, Gill said the ACLU would go to court unless the hospital reversed course and authorized the sterilization procedure. By denying “pregnancy-related care” to Miller, Gill wrote, the hospital is discriminating on the basis of sex, as defined by California law, and is also allowing “your corporate entity’s religious beliefs” to override a doctor’s medical decision, violating a state law against the corporate practice of medicine.

You can keep reading here.

Robert F. Kennedy Jr. Gets It Wrong About African-American Boys And Autism

Earlier this month, Robert F. Kennedy Jr. claimed that African-American boys have a “ disproportionate risk of autism.” Emily Willingham of Forbes has now issued a detailed response to this claim, in which she writes that “either he’s [Kennedy Jr.] very, very bad at reading scientific studies or he’s very, very cynical about the target audience for his latest book.” She continues:

The “shocking piece” about African-American boys and autism turns out to be shocking only in the surprising fragility of the evidence that Kennedy expects to support that claim and how easily dismantled it is. He attempts to lay out an argument that African-American boys (if ethnicity is a factor, then why not girls, too?) are more susceptible to autism and that something in vaccines must be responsible. Yet a look at each source he cites to support his thesis reveals no support for it at all.

You can read the full article, with detailed science-based responses to Kennedy Jr’s claims, here.

A Death from Measles

Michael Specter reports in The New Yorker that the Washington State Department of Health has announced the first confirmed measles death in the United States in more than a decade, and explains that the “herd immunity” gained by vaccinations is lost when the vaccination rate falls below ninety person — as is the case in Washington state.

One of the central purposes of universal vaccination is to provide “herd immunity” to the most vulnerable segments of the population—infants, for example, and those receiving drug treatment for cancer and other diseases that compromise the immune system. If you are sick and unable to get vaccinated, the herd around you, in theory, should provide protection. Once the vaccine rate falls much below ninety per cent, however, herd immunity disappears. Vaccine rates are particularly low in northwestern Washington, where the measles death occurred, as they are in many other parts of the state.*

Keep reading here.

Press Release – Public Health Wins Over Fear-Mongering in California: CFI Welcomes Adoption of SB 277

The Center for Inquiry welcomes California’s adoption of SB 277, which invalidates most belief-based exemptions from children’s vaccination requirements — favoring the health of California’s children over the misinformed views of vaccine opponents. The Center for Inquiry (CFI) is a national organization that advocates for public policy based on science, evidence, and secular humanist principles.

“This is a great victory for public health and the integrity of science in medicine. Gov. Brown and the majority of California’s legislators wisely resisted the enormous pressure exerted by opponents of vaccinations — an opposition founded on fear-mongering and misrepresentation of the facts,” said Michael De Dora, CFI’s Public Policy Director. “By embracing the scientific method and empirical evidence over pseudoscience and conspiracy theories, the children of California will be better protected from preventable infectious diseases, which in turn protects all of us.”

Senate Bill 277 ends “personal belief” exemptions—be they philosophical or religious—for children attending public or private schools in California, for the 10 vaccines currently required by the state, including MMR. (An amendment was added that would allow a personal belief exemption from any new vaccines that may be required in the future, an amendment that CFI opposes.) Children will be required to be vaccinated upon enrollment in kindergarten, or, if they are already in the school system, by the time they reach 8th grade.

“Inoculating against these awful but preventable diseases is a victory for science, medicine, and common sense,” said Jim Underdown, executive director of CFI’s Los Angeles branch. “The people of California will be healthier with this law.”

De Dora added that now other states must look to follow California’s lead in mandatory vaccinations. “Infectious diseases are not cured by religious faith or pseudoscientific celebrity health fads,” he said. “To truly defend against outbreaks of preventable diseases, this new California law needs to be the rule, rather than the exception, across the country. We look forward to partnering with states to help make this happen.”

* * *

The Center for Inquiry (CFI) is a nonprofit educational, advocacy, and research organization headquartered in Amherst, New York, with executive offices in Washington, D.C. It is also home to both the Committee for Skeptical Inquiry and the Council for Secular Humanism. The mission of CFI is to foster a secular society based on science, reason, freedom of inquiry, and humanist values. CFI‘s web address is www.centerforinquiry.net.

PRESS RELEASE (Link)
For Immediate Release
Contact: Paul Fidalgo
Phone: (207) 358-9785
E-mail: press@centerforinquiry.net

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