Making medical advances affordable shouldn't slow down scientific progress
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Affordable access to medical advances need not mean  slowing the development of those advances — my view from the president’s cancer panel as a patient

“Every purchase must be made, every bill must be paid with consideration of future medical costs.” That’s a typical quote from a survey of more than 1,400 cancer patients in the U.S. conducted by Patient Power, which is an organization that supports and educates cancer patients.

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I attended the meeting of the President’s Cancer Panel at the end of March. Although we were addressing costs and pricing strategies, I was pleased to hear the chairperson say we would not disincentive scientists, pharmaceutical companies, or the push toward precision medicine.

 

Those were important words to me, because I am not just the president of Patient Power, I’m a founding member. I’m a 21-year cancer survivor living with two blood cancers. I was one of only two patients out of 26 representative of academia, government, pharmaceutical companies and the insurance industry attending the meeting, and I was the only attendee on active cancer treatment.

On the one hand, I personally experience the frustrating struggle of dealing with finances while coming to grips with a terrifying diagnosis. My own doctors are talking about prescribing two oral medicines for me each with a six figure yearly price tag, and I’m not sure how much  my insurance will cover or how I will pay the difference. However, on the other hand, it is because of life saving medical advances like these, that I am alive 21 years after my initial diagnosis, and I am working as head of a large organization, travelling and lecturing, paying my bills, my taxes and my insurance premiums.

So what do we do?

First, as the chairperson said, we don’t want to de-incentivize medical progress. Too often we are hearing members of Congress and the Administration just lash out at the people who are investing time and money and effort to develop these amazing therapies. But there are steps we can take looking at the many complex factors driving up costs that are not directly tied to moving medicine forward or advancing treatments and cures.

I mentioned that I take two pills for my cancer. One example of a step we can take is to call upon Congress to pass oral drug parity legislation (H.R.1409). Without legislation, my payor charges me five times more out-of-pocket if I take a pill at home versus getting a needle in my arm at an infusion center. That makes no sense. So far 44 states have passed laws against this practice and it's time for the remaining states and Congress to do the same.

I don’t want to pick on any one industry, but another example we discussed is hospitals buying up community oncology practices. When that happens, the same treatment delivered by the same people to the same patients jumps in price.

Also, we need to stop the practice of pushing patients toward older, less effective meds just because they cost less.

And let’s remove any obstacles to pharmaceutical companies working closer with the insurance industry while new medicines are still in development. Let’s promote a less adversarial relationship with the FDA. Let’s permit pharmaceutical companies to help patients —including people like me on Medicare part D — with our co-pays, that is, our out-of-pocket costs that insurance policies don’t pay.

Speaking of that, I found out my Medicare co-pay is based on the regiment's list price, while insurance pays a reduced price they’ve negotiated with the pharmaceutical companies. That doesn’t seem fair to me.

A lot has been said during the political campaigns and afterwards about the high cost of new cancer medicines and whether drug companies are making too much at the expense of patients.

At the Cancer Panel meeting I was pleased to hear drug company leaders, and payers, too, advocate for a system where cancer care is evaluated on the value it provides — a cure or longer survival with higher quality of life.

This will require transparency of real world data where patients and doctors throughout the U.S. share their experience regarding the full range of efficacy of the medications they take. For my part, I know patients want to help supply data to calculate value. And the drug companies that make valuable, innovative products rather than me-too products should be rewarded.

But again, the spirit of the day was not to demonize, but to find ways to work together so the most impactful treatments are available and affordable to all American patients. (We are a global organization and there are different issues in other counties).

For my part I’ll be working through Patient Power to help educate and mobilize patients to work to keep the best that medicine has to offer, while working to make sure our system of insurance, reimbursement and government support makes these cures and treatments affordable to the individuals and families that need them.

We should never be asked to make a decision between our money or our life.

Andrew Schorr is President and co-founder of Patient Power, an organization providing patients and caregivers the resources and information they need to live well with cancer. Andrew is also a cancer patient. In 1996 he was diagnosed with leukemia (CLL), and in 2011 he developed a second cancer, myelofibrosis.  He is also author of The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis. Schorr has a master's degree in journalism from Columbia University.


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