Welcome to the Week in Review.

P4AD Patient Advocates on Capitol Hill

P4AD patient advocates from 10 states across the country travelled to D.C. this week to meet with lawmakers on both sides of the aisle. They shared their firsthand experiences with the crushing cost of prescription drugs and pressed Congress to advance reforms that rein in patent abuse and protect Medicare negotiation from industry-backed rollbacks like the EPIC and MINI Acts. With the pharmaceutical industry deploying three lobbyists per member of Congress, patient voices are essential to cut through pharma spin and remind lawmakers what’s really at stake. Patient advocates are the core of P4AD’s mission and advocacy, and the advocates involved had productive conversations and saw a clear appetite for lowering drug prices. As nine in ten Americans want Congress to take further action and millions are struggling to afford the medications they need, lawmakers have the public on their side and must deliver for patients. 

Trump Admin Cracks Down on Misleading DTC Ads

The Trump Administration cracked down on the pharmaceutical industry this week, issuing a new executive action targeting misleading advertisements and requiring pharmaceutical manufacturers to replace the abbreviated disclosures they’ve used for decades with full safety warnings instead. Direct-to-consumer (DTC) advertising is a major way that the industry pads its profits in the U.S. But, it’s a rare practice abroad, legal only in New Zealand. Every $1 spent on DTC advertising is estimated to result in $2.20 to $4.20 in increased sales, and even a minor 1.5% increase in DTC spending can result in a 10% increase in drug sales. P4ADNow endorsed two bipartisan bills for this very reason. The No Handouts for Drug Advertisements Act would eliminate a tax break that makes it cheap and easy for Big Pharma to flood the airwaves with ads, and the Drug-price Transparency for Consumers (DTC) Act would require companies to include the prices of their drugs in DTC ads. It’s promising to see momentum in Washington from Congress and the Administration to rein in DTC advertising. — [White House, Inside Health Policy, JHEOR, NIH, TIME, Sen. Hawley, Sen. Durbin, Wall Street Journal, POLITICO]

Pharma Campaigns for Even More Carveouts

New reporting suggests that the $5 billion ORPHAN Cures Act — which is currently being re-scored by the Congressional Budget Office (CBO) and will cost significantly more than originally expected — could make lawmakers hesitant about further carveouts for the industry. That certainly hasn’t stopped pharma  from trying. This week, the Alliance for Aging Research (AFAR), a pharma-funded front group that P4AD exposed in a previous report, is leading a letter to Congressional leadership urging support of the EPIC Act, which would further weaken Medicare negotiation. AFAR receives the majority of its funding from industry-tied donors and is now working to manufacture support from pharma aligned patient groups. Pharma’s desperation to mobilize their front groups and push through another handout — mere weeks after their last one — is simply nothing new for an industry that won’t stop until they’ve squeezed American patients and taxpayers for every possible penny. — [Pink Sheet, WSJ, P4AD, STAT News, Open Secrets] 

Patient Advocate Spotlight: Beth Kitchin

Condition: Acute Lymphoblastic Leukemia and Graft vs Host Disease (GVHD)
Drug: Jakafi ($17,500 / month)
Background: Alabama resident and former healthcare professional. Beth attended our lobby day and met with her Senators’ and Representatives’ offices this week. 

In her words:
“If your drug company doesn’t pick your medication up, what do you do? I had to do all this work on filling out forms, working with the social worker at our cancer center, and at one point, I paid $1,000 for 12 pills just to get me over this little gap until I could get on this other program.” 

“I found Patients For Affordable Drugs because I needed an outlet, and somebody that I could tell my story to. Patient stories are very powerful. They can really help people, not just other patients, but they also can help get messages across to the public and to our politicians.”

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