Latest News | Feb 16, 2021

Minnesota Patient Testifies in Support of Creating a State Affordability Board

ST. PAUL, Minn. — Bemidji cancer patient Ramae Hamrin will testify in front of the Minnesota House Commerce Finance and Policy Committee today in support of the bipartisan legislation HF 801, which would establish a prescription drug affordability board designed to protect Minnesota patients like Hamrin from unaffordable prescription drugs. 

Hamrin lives with multiple myeloma, an incurable blood cancer, and relies on Revlimid, an oral chemotherapy drug sold by Celgene/Bristol Myers Squibb, to keep her alive. Revlimid is priced at over $250,000 a year and, even on Medicare, Hamrin faces out-of-pocket costs of $15,000 a year. That is simply untenable for Hamrin. 

“In order to continue taking this life-saving drug, there is a chance I will have to deplete my life savings, cash out my 401(k), and sell my house. When those funds run out, I’m not sure what I will do. Usually, I am a planner — but I cannot plan for this,” Hamrin, age 50, will tell the committee. “My circumstances make me feel helpless at times, but I am grateful that I can share my story with all of you.”

“This bill to create a drug pricing board is an essential first step to hold drug companies accountable and fix this broken system. Drugs don’t work if people can’t afford them. I strongly urge you to vote YES on HF 801 to protect patients from the burden of high drug prices.”

HF 801 would:  

The hearing and Hamrin’s testimony can be watched here at 3:00 PM CST.  

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SANTA FE, N.M. — Albuquerque patient Kristina Caffrey will share her story of relying on a $350,000-a-year prescription medication with the state House Health and Human Services committee today. Caffrey will testify in support of House Bill 154, legislation that would establish a prescription drug affordability board designed to protect New Mexico patients like Caffrey from unaffordable prescription drug prices. 

Caffrey lives with Gaucher disease and relies on the medication Cerdelga, sold by Sanofi Genzyme for $500 a pill. Caffrey’s two-pills-a-day regime runs an annual price tag that equals the price of a house. 

“Genzyme has recouped its investments [on the drug Cerdelga] many times over, but I am still paying the price. They do this because they can — and because no one has ever demanded to know why they’re extorting people like me,” Caffrey, 33, will testify. “The burden of high prescription drug prices is not just monetary. It is also an emotional one. I have made so many decisions out of fear of not being able to obtain or afford medication.”

“This is why New Mexico needs an affordability board, made up of experts who can peel back the curtain of arbitrary pricing that has nothing to do with the costs of production, the costs of development, or the value to patients.”

House Bill 154 would: 

The hearing and Caffrey’s testimony can be viewed live here at 8:30 AM MT today.  

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WASHINGTON, D.C. —This week, two independent investigations detailed how Big Pharma is showering state and federal officials with tens of millions of dollars in hopes of winning their votes in legislative fights next year.

“Pharma may have deep pockets, but patients have our voices and our votes,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “This election year, patients are sending a message to legislators at all levels: Stand with patients, not pharma.”

According to STAT News’ analysis, Big Pharma has conducted a coordinated effort to win favor in state legislatures. “Major pharmaceutical companies and trade groups have helped to fund the campaigns of 1,933 state legislators nationwide in the current election cycle,” according to the investigation.

The Houston Chronicle highlights the influence pharma is attempting to buy in key Texas congressional races. Nationwide, the article highlights the industry’s commitment to congressional donations: “The pharmaceutical industry had already spent $26 million on congressional campaign donations through the first six months of the year trying to influence outcomes.”

In September, Patients For Affordable Drugs Now launched an effort to push back on Big Pharma’s lobbying influence. The grassroots campaign lifts up the voices of patients and calls on voters to support candidates who will stand up to Big Pharma and fight to lower prescription drug prices.

Nearly 8 in 10 Americans say drug prices are “unreasonable,” and nearly 1 in 3 Americans report not taking their medication as prescribed due to price. According to a recent national survey, 7 out of 10 likely voters say a candidate’s position on lowering prescription drug prices is important in deciding who to vote for — including 30 percent who say it is very important.

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WASHINGTON, D.C. — Four patient advocates will deliver recorded testimonials before the House Committee on Oversight and Reform this week at hearings investigating drug company pricing practices. The patient advocates will share their experiences with four high-cost drugs made by pharmaceutical corporations under investigation by the committee.
 
“Millions of patients across America have been the victims of predatory pricing practices by drug corporations that prioritize profit maximization over public health,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “Today, patients will stand up to those companies and their CEOs, share their stories, and call on members of Congress to enact reforms to stop Big Pharma’s abusive practices.”

Read a copy of David Mitchell’s testimony submitted for the public record here.
 
Watch the patient advocates’ testimonials at the hearing here starting at 10 AM today. Below are some highlights of their stories:
 
Ramae Hamrin, Bemidji, MN, multiple myeloma: Ramae, a single mom with two kids in college, was diagnosed with multiple myeloma in 2018. She relies on Revlimid to stay healthy — but faces terrifying financial burdens to afford the very high price of her medication.
 
“In order to keep taking this drug, I will have to deplete my life savings, cash out my 401(k), and sell my house. When those funds run out, I’m not sure what I will do. Usually, I am a planner — but I cannot plan for this. I am terrified for my future.”

Therese Humphrey Ball, Portage, IN, multiple sclerosis: When Therese was first prescribed Copaxone in 2003, it cost $1,800 a month and wiped out her savings. By 2017, when Therese lost grant assistance, the price of the drug had risen to $6,000 a month, and Therese was forced to forgo the medication.
 
“When I was not on the drug, I lost short-term memory and experienced other declines in my cognitive functions. This makes it difficult for me to enjoy doing the things I love, like spending time with my grandchildren. My condition shouldn’t progress faster just because drug companies want to make a few extra bucks.”
 
Kip Burgess, Chicago, IL, psoriatic arthritis: Kip is a father, an avid cyclist, and a psychologist. At 30, he was diagnosed with psoriatic arthritis. In order to treat the debilitating pain that his condition causes, Kip takes Enbrel, a drug priced at $6,000 a month.
 
“If my ability to cover those costs goes away, I know I will go back to waking up every morning in pain. These risks cause crippling anxiety on top of the burden of the disease itself. In order to avoid these interruptions in my dosing, I’ve been forced to dip into my savings and jeopardize my financial health to preserve my physical health.”

Heidi Kendall, Missoula, MT, chronic myeloid leukemia: In 2017, Heidi was diagnosed with a blood cancer called chronic myeloid leukemia. To treat it, Heidi was prescribed the drug, Gleevec, which she must take every day for the rest of her life. The price tag is $10,000 per month.
 
“I’m so grateful for Gleevec. It keeps me alive. But the price tag constantly hangs over my head. Instead of just focusing on my family and my health, I also have to carry around the burden of what would happen if I couldn’t pay for it.”
 
The four drugs featured in the patient advocates’ testimonials are textbook examples of price gouging and patent abuse.
 
Revlimid, a cancer drug developed by Celgene and currently sold by Bristol Myers Squibb, costs Medicare more than almost any other drug but is used by fewer than 40,000 patients — less than 0.01 percent of beneficiaries. Celgene and BMS increased the price of the drug nearly 200 percent from 2007 to 2019 and have maintained monopoly pricing power far beyond the period intended by law.

Teva, the company that manufactures the multiple sclerosis medication Copaxone, is under scrutiny for engaging in anti-competitive practices such as product-hopping and shadow pricing that allow it to maintain its pricing power. Since 1997, the company has raised the price of Copaxone by more than 1,000 percent.
 
Enbrel is a blockbuster drug for Amgen, and the company has gone to extraordinary lengths to protect this revenue source, including leveraging 41 patents to delay generic competition.
 
Novartis quadrupled the price of its cancer drug, Gleevec, between 2001 and 2015. At the same time, the drug company entered into a collusive agreement with a generic manufacturer to delay less expensive competitors from entering the market.

The House Oversight and Reform committee’s probe into the drug industry was launched in January 2019 under then-chairman Rep. Elijah Cummings’ leadership. Over the past two years, the committee has investigated drug companies’ anti-competitive tactics by reviewing more than 1 million pages of internal documents. In addition to hearing from six current or former executives of top pharmaceutical companies over the next two days, the committee plans to subpoena pharma giant AbbVie for documents relating to its best-selling drugs Humira and Imbruvica.
 
The hearings begin today and will continue through tomorrow, starting at 10 AM ET each day. Watch the livestream here.

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WASHINGTON, D.C. — During tonight’s debate at Case Western Reserve University, President Trump claimed that drug prices will be coming down by 80 to 90 percent. 

FACT: President Trump hasn’t meaningfully lowered drug prices.

FACT: Drug prices keep rising.

FACT: Patients are suffering under crushing drug prices and want change.

FACT: President Trump’s executive orders, like the most-favored nation proposal, haven’t been put into practice.

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WASHINGTON, D.C. — Patient advocates are calling on President Trump and Democratic presidential candidate Joe Biden to talk about their plans to lower prescription drug prices during Tuesday night’s debate at Case Western Reserve University in Cleveland. In the past two weeks, more than 1,000advocates have taken to social media to urge debate moderator Chris Wallace to ask the candidates about their plans to lower drug prices and provide relief to millions of Americans.

“Drug prices keep going up and voters want to know what the candidates propose to do about it,” said David Mitchell, a cancer patient and president of Patients For Affordable Drugs Now. “We hope Joe Biden and President Trump address the issue on Tuesday night.”

The actions are part of a grassroots campaign by Patients For Affordable Drugs Now designed to elevate patient stories and urge voters to support candidates who have plans to lower drug prices. The program includes video testimonials from patients in 14 key states sharing their experiences with high-priced prescription drugs. The campaign also features a website that highlights patient stories and serves as an action hub to give patients tools to demand 2020 candidates commit to plans to lower drug prices.

Drug pricing is a top issue for voters this year. According to Kaiser Family Foundation polling, 87 percent of Americans “say it is at least very important that Congress work on lowering prescription drug costs.”

Patients For Affordable Drugs Now is an independent, bipartisan patient organization focused on policies to lower drug prices. P4ADNow does not accept funding from any organizations that profit from the development or distribution of prescription drugs.


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WASHINGTON, DC – The following statement was issued by David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now, on President Trump’s announcement that he will send $200 discount cards to 33 million Medicare beneficiaries:

“If the president had kept his commitment to lower prescription drug prices, he wouldn’t need to promise some Medicare beneficiaries a dubious discount card days before an election.

“It is not at all clear if this is legal or how the president will pay for his scheme. It is perfectly clear, however, that this will not lower prescription drug prices for 328 million Americans.

“Americans need systemic, enduring reforms to our rigged drug pricing system, not election year gimmicks.”

BACKGROUND

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WASHINGTON, DC – The drug lobby knows no shame. In the past 72 hours, drug corporations offered a flimsy plan. It’s not designed to lower drug prices for all Americans, but to stop the Trump administration from implementing its most-favored nation proposal. In response, Ben Wakana, the executive director of Patients For Affordable Drugs Now, issued the following statement:

“Big Pharma’s political stunt is exactly the kind of sorry excuse for a solution you would expect from drug corporations. It’s a PR move designed to block a better plan that would meaningfully lower drug prices. Patients have been promised real reforms to get Americans the best deal of any nation in the world and to lower drug prices by 50 percent. Instead, the drug lobby presented a plan that is voluntary, severely limited in scope, and impermanent.

“Patients resoundingly reject Big Pharma’s offer as an alternative to the most-favored nation plan. It’s too little, too late.”

BACKGROUND

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