Opinion

How Patients Will Take on the Rigged System for Drug Pricing

Every Tuesday for the past nine weeks, I’ve sat in an infusion room for four-and-half hours receiving drugs that cost $13,000. It’s going to be every other Tuesday for the next 14 weeks. Total value of the deal — $208,000.

I am very grateful for these drugs. I relapsed months ago and so far, the new drugs are keeping my cancer at bay. I can afford good supplemental Medicare coverage. Others are not so lucky.

Thirty percent of cancer patients go bankrupt. One out of 10 patients with my incurable blood cancer — multiple myeloma — report they stop taking their drugs because they are too expensive. Drugs should not come at prices that bankrupt and ruin the lives of people struggling to stay healthy.

Why is this happening? The drug corporations have rigged the system to give themselves monopoly pricing power, charging whatever they want for new drugs and often raising prices for old drugs with impunity. There’s literally a law that prohibits Medicare from negotiating the price of drugs. Instead, drug corporations dictate prices as high as $300,000 per year.

Once the price is set by Medicare, it ripples down the whole system, and everyone gets a piece of the action. pharmacy benefit managers who run prescription drug insurance programs make more working off the high initial price. Doctors and hospitals can get percentage mark-ups. Who pays the bill? The rest of us — patients, consumers and taxpayers.

Juliana Keeping from Oklahoma City is one of those tired of being taken advantage of. Her son, Eli, has cystic fibrosis, and he will need a medication from Vertex that costs $259,000 per year. Juliana and her husband struggle to manage the costs of his current drugs and his care, and she was tired of being silent.

She gathered 125,000 signatures on a petition, marched to Vertex headquarters and tried to ask the CEO, Jeffrey Leiden — who was paid more than $28 million in 2015 — why the drug was so expensive. He said he was too busy to meet with her the entire month of October — sent some PR people instead. In any case, she got a pat on the head and was shown the door. But she is fighting back.

A solution to high-cost drugs isn’t impossible, but it won’t happen if patients don’t speak up. That’s why we started a new organization called Patients For Affordable Drugs.

Built around an online organizing hub — patientsforaffordabledrugs.org — we will amplify the voices of Americans struggling under crushing drug prices. We will stand together to make policymakers and elected officials aware. And we will fight the powerful forces profiting from a rigged system. 

Unlike most other patient groups, we won’t accept a dime from any organizations that profit from the development or distribution of prescription drugs.

What are the solutions? We have to break the monopoly pricing power of the drug corporations and restore competitive pricing. Medicare must be able to bargain with the drug companies — something leaders as diverse as President Donald Trump and Sen. Bernie Sanders agree on. We need to speed generics to market. Prices for drugs should be based on the value they provide to patients. And we need transparency on the secret deals negotiated by the pharmacy benefit managers so we can see who is making how much off of the suffering of people fighting deadly diseases.

The drug corporations say they need high profits to finance research on new drugs patients like me and millions of others need. But independent analysis shows drug companies spend a little over a penny of every dollar in revenue on basic research, while they spend 20-40 cents of every dollar on marketing and advertising. Not to mention fat paychecks for executives like Mr. Leiden. In fact, a 2016 report from the Associated Press found health care and pharma execs are paid more than leaders in any other industry.

We can cut prices and drug companies can still make plenty of money to fund research and development on new drugs and pay their shareholders a healthy return.

None of this will happen, though, without a demand for change from patients. So my wife and I are helping fund Patients For Affordable Drugs with our own money. We have received a grant from the Laura and John Arnold Foundation. And I retired to devote myself full-time to the work without pay.

It’s an uphill fight — we know that. But others in Washington have recently beaten the odds. The only way to guarantee failure is not to try. So here we go.

 

David Mitchell was diagnosed with multiple myeloma six years ago. His wife, Nicole, is a breast cancer survivor. They live in Potomac, Md.

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