I enjoy watching “60 Minutes” on Sundays. Two recent episodes focused on drugs companies. Both of the stories were negative, and deservedly so. But they made me wonder.
One was about Purdue Pharma, a company that has misled doctors and patients about how addictive its drug OxyContin actually is. The other was about Kaleo, a company that has jacked up the price of naloxone, a drug that counteracts opioid overdoses.
Those stories made me wonder what “60 Minutes” could do if it also showed its millions of viewers people with cancer or other devastating illnesses who, thanks to biopharmaceutical companies, are alive today because of drugs those companies developed.
From my perspective as someone with a rare disease, the conversation about the biopharma industry — which is essentially “bad pharma” — appears scarily without nuance. I am not advocating on behalf of companies that act immorally, unethically, or illegally. But I don’t believe that the industry is villainous, as media coverage suggests.
I was diagnosed with Friedreich’s ataxia in 1981. This rare, inherited disease causes damage to multiple systems in the body, including the nervous systems. Many people with it need a walker or a wheelchair to get around. The disease can also cause fatigue, slurred speech, diabetes, cardiomyopathy, hearing loss, vision loss, and scoliosis.
When I was diagnosed with this always disabling and often fatal degenerative disease at age 19, it was poorly understood and the focused effort to find treatments for it hadn’t begun. I recall one doctor predicting I would be dead in 16 years (he was obviously wrong) and another telling me, “Take some vitamin E. That might help, but we aren’t sure.”
Fortunately for me, and for the millions of people like me with rare diseases, advancements in research over the past 30-plus years, many of them from the biopharma industry, offer not just hope but extra years of life.
The patient organization serving those of us with Friedreich’s ataxia, the Friedreich’s Ataxia Research Alliance, lists 20 treatment approaches in various stages of development. Even though there is not yet a proven treatment or cure, I can’t begin to express how hopeful this makes me. Many of these pharmacological and biological approaches, supported by the biopharma industry, are in or nearly in clinical trials.
Scientists would not be where they are in terms of treatments for Friedreich’s ataxia without the understanding of the disease’s causes and mechanisms that have emerged from research funded by the federal government, the Muscular Dystrophy Association, Friedreich’s Ataxia Research Alliance, and others. But neither the government nor these private organizations have the human or financial resources to translate this understanding into treatments and cures. The biopharma industry has the means and the will to do that. Those of us with rare diseases need industry’s engagement and investment to help us stay, or become, healthy.
The industry scientists I have met are motivated by a desire to cure disease. Do their companies want to make money? Of course they do. But I would rather have a company make money by helping me be healthy than by helping me look cute. No one is outraged that The Gap makes money. Why should people be outraged that a biopharma company makes money?
In the U.S. today, the search for cures and treatments relies on industry. Maybe that needs to change. And bad actors definitely need to be punished. But just as we don’t condemn the entire auto industry because Toyota put cars with malfunctioning gas pedals on the highways, we shouldn’t villainize the biopharma industry because some companies and their leaders put profits over people.
I can imagine people thinking I work for a biopharma company or was asked — or paid — by the industry to write this article. None of those are true.
Casting the biopharma industry as a villain discounts the experience of people like me who have been engaged with, and are relying on, industry for the treatments we so desperately need. I plan to keep educating myself about what is happening in this industry, both bad and good. I will join in decrying bad actors. But I urge the media and politicians to help the American public see the good these companies do.
Jean Walsh volunteers for the Friedreich’s Ataxia Research Alliance Ambassador program and the Merrimack Valley Hospice, based in Lawrence, Mass.