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Patients for Affordable Drugs Now provides a voice for lower drug costs

By Chris Linville, America's Pharmacist, on 2/11/2019

In the never-ending discussion about health care and medications, it often seems like we're at 30,000 feet, well above the real world. Think tanks produce white papers and policy briefs. Congress holds hearings. Corporations talk about "lives" and quarterly earnings. People in suits with fancy titles meet with other important people in suits with fancy titles, and they talk and talk some more. But nothing really happens. As the great basketball coach John Wooden once said, "Don't mistake activity for achievement."

But what about those people way down there, on the ground? Regular folks relying on life-saving medications and worrying if they can afford them without having to sell their car or being late on the rent. You treat those people daily in your pharmacies. Just who are they?

David Mitchell is a name, face, and leader among those people. Drugs are literally keeping him alive. Eight years ago he was diagnosed with a blood cancer called multiple myeloma. It's incurable but treatable with drugs. The cost? About $10,000 at retail every time he receives treatment, or about $300,000 per year.

"I am completely dependent on innovation and new drugs for my survival," he says. "Myeloma is smart. It finds its way around existing drugs, so I need them to invent new ones."

Mitchell saw the impact that expensive drugs costs were having on people with serious diseases. In 2017, he and his wife (a cancer survivor) founded Patients for Affordable Drugs Now.

We asked Mitchell about his hopes, frustrations, and goals in reducing drug prices and bringing transparency to the market.

Q: Why was Patients for Affordable Drugs Now created?

A: "My experience as a cancer patient brought me to a fundamental truth – drugs don't work if people can't afford them. I have been involved in health policy work for more than 30 years, and as a patient I became frustrated because there was no patient group speaking out on drug pricing. One day I had an epiphany and thought, 'Oh, maybe I should try and do it.' We put in some of our own money and got some help from a couple of foundations, and launched on Feb. 22, 2017."

Q: What are some objectives?

A: "We do two main things – we collect patient stories and amplify those stories to policymakers and elected officials. And we are building a community of patients who we can mobilize in support of policies to lower drug prices. That community has grown to more than 125,000, and it keeps growing. We work at the state and federal level to give patients a vehicle to advocate from themselves. We help patients go testify before state legislatures, come to Washington to talk to their elected officials, send emails, and make phone calls, so that elected officials can hear from real people demanding change."

Q: Why is it so important for patients to have a voice?

"All of our strength turns on the patients who are angry, who need help and are demanding change. The stories we get are heartbreaking. We hear about people cutting pills in half. People stretching their insulin longer than they should and risking going into insulin shock. People who go into debt. People who have to refinance their houses, people who have actually declared bankruptcy because of high prescription drug costs. Real Americans who are being hurt and demanding change, that's where our strength comes."

Q: What are your thoughts about PBMs and prices?

A: "Our concern about PBMs is that they are not transparent, and everything they do, they do in secret. As a patient I don't know if a drug is on the formulary because it is the least expensive drug among equally effective clinical options, or if it's just the most clinically effective drug, or because the PBM was paid to put it there by the brand drug company. We can't tell if PBMs are operating in the best interests of patients because of their secrecy and lack of transparency."

Q: What do you want from PBMs?

A: "We want PBM transparency. We want to know if the PBM gets a rebate, and how much do they put in their pocket, how much do they give to the insurance company, and if anything reaches the patient or consumer. We feel even more strongly about this because when Congress enacted the Medicare Part D benefit, it precluded direct negotiations by the government with the drug companies and said they were going to let PBMs do it for Medicare beneficiaries. So PBMs are actually an expression of our public policy. And they do all of their business in secret. That's a recipe for bad things to happen."

Q: Should manufacturers be forced to compete for formulary placement solely on list price and the effectiveness of the drug?

A: "Absolutely. Unequivocally. This is just crazy that a drug could find its way on to a formulary that's supposed to be in my best interests based on the PBM receiving a larger payment or inducement from the drug company. That's nuts.

"I will tell you of a personal frustration that I had. I ask questions of PBM representatives when I have the opportunity. As a patient, I ask, 'How do I know that the drug is on the formulary because it's the least expensive drug or the most clinically effective drug, or because the PBM got a payment?' I never get straight answers. It's frustrating because I try to ask the PBM representatives: 'Explain this to me! Reassure me! Help me understand how I can feel comfortable that you are representing my best interests.' And I never get straight answers. I get a lot of doubletalk."

Q: How can patient advocate groups such as yours work with community pharmacists?

A: "I think it is important that we all work together to reform the system. The system starts when the list price is set by the drug companies, and it flows down from there in the supply chain. We need to be working together to reform the entire supply chains, starting with the list price. Doing structural reforms that lower prices of the drugs or ensure timely generic competition are things we should be able to make common cause. I think there are things we can do together where a patient voice can be helpful in supporting community pharmacists, and I know there are times when community pharmacists can be helpful in supporting some things that may affect patients directly. So let's do it."

Q: Do you anticipate any action from Congress to address prices?

A: "We do believe there will be some bills that move early that are bipartisan, largely in the area of patent reform. We think that there will be a package of legislation on which there is strong bipartisan agreement in those areas in the new Congress. And we have high hopes for those measures. We would expect that the Democrats in the House will move a bill on direct Medicare price negotiation. That is harder to get through the Senate because there won't be the same strong Republican support as there is for some of the patent reforms. Patent reforms are about making the free market work. Republicans who we engage with are much more receptive to that then they are to direct price negotiation. I believe the Democrats will move a direct Medicare price negotiation bill, and I think it's important to work on behalf of that because it could go somewhere, given that the president has said he wants to do something about drug prices."

Q: What do you expect from the administration and federal agencies?

A: "The administration is proposing to use reference pricing to bring down the price of those expensive infused drugs under Medicare Part B by 30 percent. And when you bring down the list prices by 30 percent, you bring down my out-of-pocket (I'm a Medicare beneficiary) by 30 percent because out of pockets in Part B are paid on the basis of list price. That's important. And we believe there will be other proposals forthcoming from the administration that are worthy of support. So we expect more to come from the administration, and [FDA] Commissioner [Scott] Gottlieb is doing many things to try and get generics to market faster."

Q: What about in the states?

A: "At the state level, we think there will continue to be action there, both on transparency and PBM matters. We will be supporting those efforts in the states. We have a plan written for 2019 that includes engaging in at least 6-8 states and some of those are going to be states where these PBM reforms are being undertaken."

Q: Why is important to stay focused on this issue?

A: "The drug companies keep pointing out that overall U.S. spending on drugs is down. And the reason it's down is because of generics. The brand prices keep going up. Generics are coming down in price. But even if you believe that the drug companies have moderated their price increases, why in the world would any of us believe that as soon as the heat is off, if we let up, that they won't go back to doing exactly what they were doing before? Which is raising prices as much as they think they can get away with. My point is that there is momentum right now, and there's political energy right now, to reform the system."

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Chris Linville is America's Pharmacist managing editor.
Patients for Affordable Drugs Now launches campaign in support of Medicare Part B drug price reduction

Patients For Affordable Drugs Now has launched a nearly $1 million campaign in support of the Department of Health and Human Services' proposal to lower drug prices in Medicare Part B. Under the proposal, Medicare would pay only 26 percent more than other wealthy countries for drugs administered by physicians or in hospital settings – that's compared to the 80 percent more it pays today. The campaign will include digital advertisements, patient fly-ins, polling, and videos featuring patients who stand to access more affordable drugs under the proposal. The nationwide ads on Facebook, Twitter, YouTube, and Google will urge Americans to contact their senators and representatives in support of the HHS Part B demonstration.