WASHINGTON — Five years ago, the phrase “right to try” wasn’t yet an inkling in the minds of its staunchest advocates. Today, the pithy shorthand for the campaign to get dying patients access to experimental treatments has been slapped on bumper stickers, emblazoned on T-shirts, and uttered by some of the most powerful figures in Washington.
At the White House, President Trump has made clear he sees the issue as a priority. And on Capitol Hill — otherwise largely paralyzed on health care policy — Republicans are working on legislation that could fundamentally alter the way in which terminally ill patients can gain access to drugs.
Whether and when a bill will ultimately land on the president’s desk, or even what it will look like, is anyone’s guess. But the past three months have made one thing clear: The modern “right-to-try” campaign — and the scrappy libertarian movement behind it — is closer to legislative reform on this issue than ever before.
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As a physician who cared for the critically ill the pressure by patients and families to “do something” is obvious. Surgeons are typically able to refuse to operate if they believe they cannot offer a benefit but are likely to make things worse. The same opportunity does not exist for physicians who prescribe medications or are responsible for non-surgical care (respirator, dialysis, etc.)
Deciding whether to add such measures when the likelihood of benefit is minimal and the likelihood of pain or suffering is high is one of the most difficult facing the critically/terminally ill. The physician is responsible for helping the patient/representative make an informed decision and then comply with the wishes of the affected.
A compromise might include: clear labeling with written consent that the treatment is unproven or not demonstrated to benefit the condition for which it will be used, that the patient agrees to provide the FDA and the manufacturer with relevant medical information and the patient is responsible for the cost of the medication.
RCK — Very good reality based Medical analysis. I’m sure the RTT groups expect to get the unproven experimenatal drug at no cost. Of course, if they pay a fee and they don’t get the results they want or aren’t the miracle patient some greedy heir will initiate a lawsuit. There must be an agreement for a waiver of liability and forfeiture of the right to sue.
Right to try sounds like a moral issue, and it is. However, it is NOT a Hippocratic oath moral issue. It is a “Thou shalt not steal” type of moral issue. It is all about profiting from desperation of terminally ill people, and that’s immoral.
The vast majority of right-to-try patients die regardless of getting an experimental treatment – but their medical bills do NOT DIE. Those can run into the hundreds of thousands if not higher. One way or the other the public pays; not Big Pharma.
If it works however, then Big Pharma gets a free human trial that lowers the risk of investing in a costly clinical trial paid for by the public.
As a Pharmacist I oppose this absurb proposal. The patient has a Terminal Disease. Address your past, makes amends and deal that the natural process is occurring. The thought of allowing patients try something that is unproven and may cause expedited death is repulsive. No matter when my time comes I would never go this route. Death with Dignity is my desire. Live a good life and accept death as a journey to the unknown.
Good for you. Now let others decide for themselves. How dare anyone take that right away from them.
The idea that Euthanasia would be legal but not blanket right to try is logically indefensible. The net positive or negative to society or patients is irrelevant, it’s a question of ultimate personal freedom. Most of the article is irrelevant because it addresses whether it would be “good” or “bad” for patients, drug companies or the FDA – the only question that matters is if we decide to give terminally ill patients the right to choose on their own terms how they will pass (or attempt to fight for life). This law is popular because it appeals to basic common sense which the Euthanasia movement laid the groundwork for.
Contrast this article with the Globes Editorial the day before . ” A Path Forward for Experimental Treatment “. The Op Ed raises good questions about whether the FDA is keeping up with the faster pace of 21st Century drug development. We patients have seen firsthand that they are not. My wife was the first patient to testify for RTT in Ariz. and Colo. Her story is on the Goldwater RTT website. ” Lorraines Story” . She is very much alive, 6 yrs. cancer – free, no thanks to the FDA of Pres. Obamas’ era.
This article is the usual liberal bias – pro Big Govt., Big Govt. never makes mistakes , etc . Automatic defense of the FDA – that they never make mistakes. Well, RTT was born out of mistakes the FDA did make , denying accelerated approvals for drugs the experts knew worked. RTT also highlighted how Slow the FDA was. How cumbersome it’s paperwork was. Kudos to the Globe Editorial staff for listening to actual pt.’s like Matthew Bellina, not ” armchair experts ” who have never had to fight this fight.
Yes. Ultimate personal freedom is what we are fighting for. There always has been and there always will be people who think they have the right to tell you what to do with your life.
YES. It’s ultimately a question of personal freedom. Period.
I supported Euthanasia and Right to Die from the start and I do believe in a Good God. I understand there is that shred of hope for some and a few will have the miracle. As long as it doesn’t become a litigineous issue I can cautiously Support. I don’t want to see lawsuits if the patient dies from not being shown every potential side effect or adverse reaction. If there is a waiver of liability for the developer/ manufacturer I’d Support. Hope is a great extender of life.