Support “right to try” for terminally ill patients in Santa Fe

With all of the bad legislation coming out of the Legislature in Santa Fe, HB 228 (“Right to Try” by Rep. Rebecca Dow) is one of the few bills that would expand freedom in the 2017 session. This opinion piece ran in today’s paper.

Seriously ill deserve every chance

When my son, Dusty, was diagnosed with melanoma cancer at age 35, our entire family was shocked. Before he was even diagnosed, the cancer had spread to his lymph nodes. This made his treatment plan urgent and aggressive and ruled out several existing treatments.Doctors in the hospital where he was being treated were conducting a clinical trial on a new and promising melanoma treatment. Because Dusty was young and otherwise healthy, we were sure that he would be able to get into the trial. We were wrong.

My son was not able to qualify for the clinical trial that was being done in the same hospital where he was being treated for the same disease because his cancer was already too advanced. Unfortunately, this is all too common.

Fewer than 3 percent of all cancer patients are able to enroll in clinical trials. It’s not because they don’t want to; it’s because it’s very difficult to qualify.

My son died two years after he was diagnosed, at age 37, and just two years after that, the drug that could have saved his life was approved by the FDA.

Too many families share our story. Too many families have a loved one facing life-threatening illnesses that are too sick to qualify for a clinical trial and end up missing out on a promising treatment that could help them because it is still in the approval pipeline.

It can take up to 15 years for the FDA to fully approve a new drug. When you’re diagnosed with a terminal or life-threatening illness, you simply don’t have that kind of time.

That’s why I support HB 228, the New Mexico Right to Try Act, which is currently under consideration by New Mexico lawmakers. This bill would give terminally ill patients – people like my son – the ability to try promising new treatments that the FDA has determined are safe but not yet fully approved.

People have asked if it’s safe to try a drug before it’s fully approved. The answer is that the drugs that would be available under this law have all passed government-approved safety tests and are being safely used in clinical trials. These are the exact same drugs that people are being given in clinical trials, so there is no extra risk for patients who take the drug under Right to Try. When you have a terminal illness, it’s not a risk to try something that might help you, even though there’s no guarantee. It’s a risk not to try.

But there’s a more fundamental question: Who should decide what a terminal patient can and cannot try? In my son’s case, someone at the FDA – a government agency in Washington, D.C. – made the call. They never met my son; they didn’t know his situation. They just said no one with cancer that had progressed past a certain point was allowed to try the drug.

I believe, and I think most New Mexicans believe, that the only people who should be making the choice about what kinds of treatments a dying person seeks is the patients, their families, their doctors, and the company that has the product that might help them. The federal government shouldn’t have had the ability to tell my son no when his doctors thought there was something that could help him.

I believe that the drug approval process ultimately serves us well. I want to make sure that when something is approved that we know all we can about the side effects and we’re certain it will work. And this bill doesn’t do anything to change that. All it does is give people who are in life-threatening situations the ability to do everything they can to try to save their own lives.

My son had nothing to lose by trying a drug that was still in clinical trials, but he didn’t get that chance. Let’s give future patients the right to try so they don’t face the same situation.

Norma Riley is a retired school teacher in Hobbs. Her son, Dusty Hydrick, died in 2009.

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