Posted by Becky Martin, NPA Advocacy Director October 10, 2017 at 12:01 AM
Written by Susan Molchan, MD, NPA Board Chair-Elect
Last week I attended “At What Cost? A Forum on prescription Drug Prices,” organized by The Atlantic magazine. My concern that the prices we pay for too many drugs are not worth their promised benefits is one of the reasons I joined NPA. As a former FDA medical officer, and member of NPA’s FDA Task Force for the last few years I know a lot about this topic, but I learned a few things at the forum.
The first speakers, Matt Thompson, Executive Editor of The Atlantic, and Senator Amy Klobuchar (D-MN) used words such as “explosively innovative,” and “incredible innovative discoveries” to describe drugs being approved today. I raised my hand to ask them what drugs they were referring to but unfortunately couldn’t get called on; the forum was packed with approximately 150 people. I tweeted a couple of the many references to the forum’s hashtag that show that over the past decade over 90% of drugs approved offer no advantage over existing drugs, only higher prices and more unknowns about risks and side effects since there is less experience with them http://healthaffairs.org/blog/2015/07/06/serious-risks-and-few-new-benefits-from-fda-approved-drugs/. For the much touted hepatitis C drugs for example, we still don’t know whether people who take them will have reduced rates of liver cancer and cirrhosis, or whether the damage to their livers is already programmed in, despite clearance of measureable virus. New cancer drugs can work remarkably well, at least in the language of survival as used in oncology for some people. But an increasing number of reports show that too many of the approved drugs for cancer don’t work at all for the things we care about. Despite shrinking tumors for a time, they prolong neither survival nor quality of life https://www.usatoday.com/story/news/nation/2017/02/09/new-cancer-drugs-do-little-improve-survival/97712858/.
I knew that the pharmaceutical industry contributes more to congressional campaigns than any other industry, but I didn’t realize what it actually takes to sway a legislator—an average of only $75,000 to members of the Senate.
A PhRMA representative at the forum lamented how just one company had spent over three billion dollars trying to get a drug for Alzheimer’s disease to market. I wondered how much more they would waste on trying to take advantage of this “market” they see expanding as our population ages. As a former Alzheimer’s disease researcher, I know that most people with Alzheimer’s disease, thought of as the most common form of dementia, are in their 80s, and that it is due to multiple factors that accompany aging, with added risk from lifestyle choices, such as smoking, diet, exercise, and high blood pressure. We are always going to have elderly people in need of care. More pills are unlikely to improve their lives much, more real care likely will: getting outside, getting to the gym or physical therapy, spending time with people who engage with them.
There was the usual question: How can we get drugs to market more quickly? No mention was made that our FDA is approving drugs—some say rubber-stamping—faster than ever before, and faster than any other regulatory agency in the world.
Who do high drug prices impact? I learned in the forum that 83% of us spend less than $1000 a year on medicines. No many of us need the very expensive drugs—those of us unlucky enough to get a cancer or some rare disease such as cystic fibrosis. Some of these may be worth it if they decrease hospitalizations, improve quality of life and extend it for years. Others, with more run-of-the-mill chronic diseases like diabetes or asthma have seen the prices on their insulin and inhalers jacked up by corporations for no good reason other than the profit motive.
One of the leaders in shining light on what we are really paying for, Peter Bach, Director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center, noted that his group now has a website tracking the cost of cancer drugs https://drugpricinglab.org/. He made the point that Medicare and Medicaid are required to pay for cancer drugs, and that every other country uses technology assessments to determine what to pay for drugs and devices. We use, he said, “the monopolists.”
What drugs are worth will continue to be a focus of work at NPA. Our FDA Task Force and our Communications Committee work together on this important topic. If you think you might be interested in helping in this effort of would like more information, please let me (firstname.lastname@example.org) or our Advocacy Director Becky Martin know (email@example.com).