Out of health insurance and needing medication, some patients are tapping a rich resource of free, cutting-edge care: medical experiments.
The loss of health insurance can be devastating to people who have a disease. some will try to pay for care out of pocket, others will skip doses to make prescriptions last longer, and then there are those who will simply go without. Another group of people will turn themselves over to be human guinea pigs, in the hope of getting free medical care.
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George Nylander is spending his days in his tidy north Philadelphia home when he’d rather be working. But he lost his job this summer. Along with it, he lost health insurance for him and his wife.
Nylander: I am paying cobra right now and it’s very difficult because it’s so high. Notwithstanding, I need it so I’m managing the best I can.
Nylander pays about four hundred dollars a month for Cobra — that’s the program that allows laid off workers to extend their health benefits for a limited period of time. Plus he pays an additional sixty dollars in co-pays for his hypertension medication. Nylander says he’d consider joining a medical experiment to get free drugs, even though he says it is a big risk.
Nylander: I would actually like to have my medications wherein I know I am being treated, rather than thinking I am being treated and I am not…but then one has to do what one has to do.
Pharmaceutical companies or the government foot the bill for the doctor visits and experimental treatment involved in human drug trials. That makes experiments an appealing option for the growing number of people without health insurance. Steve Zisson is the editorial director of Center Watch, a group that tracks the clinical trials industry.
Zisson: We’ve seen anecdotal evidence that more people without insurance are going into clinical trials. there isn’t a lot of hard data yet since it’s still fairly new in the cycle. But definitely we’ve heard that around the clinical research community.
That’s the option Ari Siegel took after she was diagnosed with lupus 15 years ago. She was working as a nurse, and didn’t have health insurance. So she went to a doctor who enrolled her in clinical trials for lupus drugs.
Siegel: I’ve been in several. but it’s not always pleasant. It’s not always something that you want. It’s not always convenient. And it’s nothing to do with my doctor, it just sometimes you feel like a guinea pig.
Siegel says she’s had to quit some experiments because she had bad reactions to the medication. Another time she had to get an IV drip that lasted four hours every visit. But, Siegel says it’s worth it. She’s able to see her doctor for free, and has been able to get some medications that do make her feel better.
Siegel: I do the trials not only just to get healthcare but I know that maybe someday I’ll be one of the people that are in that study that shows that this drug is going to help a lupus patient and this drug really works.
Altruism is the number one reason why people say they join a medical experiment. That’s according to a survey by Center Watch. But increasingly free medication and care are on the rise as reasons people sign up. Shivkumar Hatti is a psychiatrist in media, and he conducts experiments for pharmaceutical companies. he says about half of his patients join trials because they are uninsured or underinsured.
Hatti: I think most of the patients find it to be beneficial.
That’s because patients get six to nine months of bi-weekly visits in addition to whatever experimental drug they’re given — all for free. But Hatti adds that it is not a substitute for health insurance.
Hatti: we need to consent them and make them aware that it’s not a clinical treatment, it’s really a research treatment that they are undergoing.
And it doesn’t last forever. Hatti says once a trial is over, he makes sure his patients are stable for the next three months. but there’s no guarantee another experiment will be waiting around the corner.