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New Group Takes on Drug Prices and Big Pharma

It’s a good time to be an advocate for lower drug prices.

Congress is happily hauling drug company executives front and center to explain rising drug prices. The latest: Spencer Williamson, president and CEO of Kaleo Pharmaceuticals, which makes an injector device for the overdose drug naloxone.

Image: David Mitchell, founder of Patients for Affordable Drugs.
David Mitchell, founder of Patients for Affordable Drugs. David Mitchell / Patients for Affrorable Drugs.

“Unfortunately, reports indicate Kaleo has responded to the increased need for naloxone devices by raising the price for Evzio by over 600 percent,” more than 70 Democratic members of Congress from both parties wrote the executive this week.

Congress has weighed in on price hikes for Epipens, and has raked the former head of Turing Pharmaceuticals, Martin Shkreli, for raising the price of anti-parasitic pills from $13.50 to $750 apiece just because he could.

President Donald Trump has taken on the issue, also. "We have to get the prices down," Trump said during a meeting with pharmaceutical company executives last month. "We have to get the prices way down."

Related: Trump Calls for Lower Drug Prices

Now David Mitchell is now taking on the fight fulltime.

Mitchell, 66, has multiple myeloma and says the drugs that help keep him alive cost $26,000 a month.

It’s not a problem for Mitchell, who made a good nest egg at a public relations company he helped found.

But he says he wants to advocate for others paying too much.

“It has become increasingly clear that patients are getting killed by high drug prices,” Mitchell said. “They are losing their homes. They are spending their kids’ education money. They are depleting their 401ks.”

On Wednesday Mitchell launched a new advocacy group, Patients For Affordable Drugs. He said he kicked in $75,000 of his own savings and won a $500,000 grant from the Laura and John Arnold Foundation to set up a website and to begin lobbying for ways to bring down the prices that patients get charged for drugs.

CVS to Sell Generic Version of EpiPen as Cigna Drops EpiPen 1:39

“We are going to collect stories about patients grappling with the high cost of drugs,” said Mitchell. He and the group’s executive director Ben Wakana — a former spokesman for the Health and Human Services Department under Barack Obama — want to organize these patients.

Related: Medical Bills Drive Women Into Debt

“We’ll collect email addresses and zip codes to build a community of patients who can be mobilized to stand up and fight for policies that can lower the prices of prescription drugs,” Mitchell said.

He wants to take aim at drug companies, hospitals and pharmacy benefit managers.

“The system is rigged. It is based on monopoly pricing power for the drug companies,” Mitchell asserted.

One example he gives is Revlimid, used to treat his own type of cancer. It costs more than $128,000 a year per patient, generating $7 billion last year for Celgene, the company that makes it.

The drug isn’t a new monoclonal antibody, one of the targeted therapies designed to specifically destroy a certain type of cancer. It’s not one of the new immune modulators that helps a patient’s own body destroy tumor cells. Revlimid is based on thalidomide, a 60-year-old drug originally developed to treat pregnancy induced-nausea that was taken off the market after it caused severe birth defects.

Related: Cancer Raises Bankruptcy Risks

“Drug corporations tell us if we don’t pay their outrageous prices, they won’t develop the new drugs people need,” Mitchell said. But he wonders how Celgene can justify such a high price for a drug it did not have to invent.

The U.S. has a free-market system, and companies can charge whatever prices they like. But the U.S. also has some ways to push back, such as through Medicare, perhaps the biggest single buyer of drugs.

“We are going to advocate that Medicare should be able to bargain for the prices of drugs,” Mitchell said.

“We are going to focus on a core set of policy changes. We do have to break the monopoly pricing power.”

Related: How to Get Help Paying for Drugs

That’s something that both Trump and his opponent, Democrat Hillary Clinton, advocated for.

Mitchell would also like to see speedier approval of generic and bioequivalent drugs, which are usually cheaper than the brand-names they copy.

Another possible point of pressure — taxpayer-funded research. The National Institutes of Health spends billions developing experimental new drugs, then spins off the most promising to private companies. Advocates have for years suggested making companies give a break to patients if they use NIH research for their products.

Related: Breast Cancer Treatment Prices Vary Widely

“We believe that if a new drug is invented using public funding, companies should disclose how they got to a price,” Mitchell said.

And, he said, everyone who handles a drug can take a cut — from the hospital to the physician. “Prices ripple down the system. Everybody makes more money off that higher price,” Mitchell said.

There are plenty of groups that help patients with various diseases, but few brave enough to take on the drug companies that often sponsor them, Mitchell said.

Molly MacDonald agrees. “A nonprofit that is set up to help patients get drugs and that receives grants from pharma certainly isn’t going to lobby against them,” said MacDonald, who founded her own nonprofit, The Pink Fund, to help breast cancer patients.

Related: Cancer Patients Face Bankruptcy

“If I were running a nonprofit that had the opportunity to help people get the medications they need that are essential to their lives, I would never go after a pharma company and risk losing funding,” said MacDonald, whose tiny, Michigan-based group helps 65-85 patients a month pay non-medical bills.

Much money is at stake.

According to IMS Health, the global market for treating cancer has grown to $107 billion, with the United States accounting for 45 percent of that.

In 2014, every new cancer drug approved by the U.S. Food and Drug Administration cost more than $120,000 a year to use.

It cost an average of $58,000 to treat someone with cancer who had private health insurance in 2014, IMS says. Patients who took pills paid an average of $3,000 out of their own pockets, and those getting infused drugs paid $7,000 a year.

Related: Experts Demand Cheaper Cancer Drugs

And the American Cancer Society found in a study earlier this month that a third of cancer patients under 65 have skipped doses, delayed filling prescriptions, tried to buy drugs from overseas or taken other measures to lower the cost of treatment.

“I am a patient completely dependent on innovation and new drugs and new drugs for my survival,” Mitchell said.

“Those drugs can and must come at prices that don’t ruin patients’ lives.”