By John Celock
A group of Republican lawmakers in Kansas wants to make it the sixth state in the country to pass legislation that would allow terminally ill patients in the state to utilize medication that have not received federal approval.
Rep. Brett Hildabrand (R-Shawnee), a sponsor of the bill, said that he views his “Right to Try” legislation was consistent with expanding personal freedoms in the state. Under the legislation terminally ill patients would be allowed to utilize treatments that have not been approved by the U.S. Food and Drug Administration. The Kansas bill follows five other states that have approved the legislation, including neighboring Colorado, which was the first to approve the law earlier this year.
“This is a personal freedom issue. If you have been essentially been given a death sentence from a terminal illness, how dare the government stop you from that treatment,” Hildabrand told The Celock Report. “If it is tied up in government bureaucracy you and I would want every option we have to fight terminal illness.”
Hildabrand is pushing the legislation along with Rep. Craig McPherson (R-Overland Park) and Rep. Mike Kiegerl (R-Olathe) in the legislative session that starts in January.
Right to Try legislation has already been approved by lawmakers in Colorado, Missouri, Michigan and Louisiana and in a voter referendum in Arizona this year.
Under the terms of the Kansas proposal, insurance companies would not be forced to pay for the experimental treatment, but can offer to be pay for the treatment for a Kansas patient. Hildabrand noted that while he and his colleagues want to expand treatment they do not want to force a mandate on insurance companies.
The Kansas legislation will also offer liability protections to doctors and insurance companies who offer the experimental treatment to Kansas patients.
Hildabrand, who is one of the leading libertarian lawmakers in the state, said that in many cases the treatment options have been undergoing clinical trials and are awaiting final approval from the federal government. He said he sees the law in Kansas and other states providing more assistance to pharmaceutical companies, noting that they will have the ability to have new clinical trials with the terminally ill patients who undergo the experimental treatments.
“It offers pharmaceutical companies the ability to get more trial data,” Hildabrand said. “If you’ve got patients who have a form of cancer and there is a treatment out there. They’ve been told they have so many months to live and they choose to do the trials that gives more data to the pharmaceutical companies to see how the treatments are working in the real world.”
The Goldwater Institute, a conservative think tank in Arizona that pushed that state’s bill, cited that it takes 10 to 15 years on average to obtain FDA approval for a new drug and that the process costs pharmaceutical companies $800 million to complete. The Goldwater Institute noted that terminally ill patients who request FDA approval to use an experimental drug could face 100 hours of paperwork and that the final decision rests with the FDA.
While Right to Try legislation has been gaining support in state legislatures, the medical community has been pushing back against the concept. Arthur Caplan, director of the medical ethics division at New York University Langone Medical Center in New York City, told medcitynews.com over the weekend that Right to Try laws are “feel good” laws that will not have any real effect.
Caplan is a member of a working group at NYU Langone Medical Center focused on Right to Try issues and has issued recommendations opposing the legislation at the state level. The working group’s website notes that the laws could have “adverse effects on clinical care in the future” and bemoans that social media is being used to obtain the experimental treatments for those in the future. The group says that those who can use social media and social relationships effectively have a better shot of obtaining the experimental treatments.
The NYU working group website states on their website that the FDA is not serving as an impediment to treatment now. The group also says they want more data before any laws are passed and to move away from social media discussion of the policy.
Earlier this year, Caplan wrote an op-ed for NBC News, calling Right to Try laws “pathetically inadequate” and noting that they are limited to the terminally ill, along with not covering travel costs. He also wrote that the laws would not address “what if the drug you want is a crummy drug peddled by a crooked doc looking to make a fast buck off the desperate?” He noted that the sponsor of the Colorado bill said the movie “Dallas Buyers Club” about those seeking access to unregulated drugs to combat AIDS during the 1980s was her inspiration.
“Giving the dying and the very sick a better chance at compassion is a serious ethical challenge,” Caplan wrote. “Passing bills full of empty promises based on Hollywood rather than the real world of today is not compassionate but, actually, flat-out cruel.
Hildabrand said that he believes that the bill has a good shot of passing. He noted that in discussions with the other sponsors, the discussion of the bill being pro-life legislation came up and that this could help rally other legislators to the bill, along with those who are pushing a limited government philosophy in the state.
“I visited with the other sponsors and one of the things they mentioned is that this is a pro-life bill. Usually when we think of pro-life legislation in Kansas it’s about pregnancy, but one of the other things they lobby for is end of life care.” he said. There is a pro-life part of it and a limited government aspect to it. I think it could appeal to a wide range of people.”