Patient Advocate To Testify In Support Of Oregon Bill To Penalize Big Pharma for Abusive “Pay-For-Delay” Deals

SALEM, Ore. — Oregon patient advocate Joanna Olson will testify today in front of the Oregon House Health Care Committee in support of Senate Bill 764, which would crack down on abusive “pay-for-delay” deals between pharmaceutical manufacturers that delay generic competition and keep drug prices high.

Olson, a retired grandmother in Beaverton, suffers from a blood clotting condition. She is prescribed Eliquis, which costs her $430 for a month’s supply. “Every time I pick up the prescription, I think about leaving without the drug,” Olson, 86, will explain. 

Eliquis wasn’t always this expensive — the company that makes it has hiked the price every year since 2013, nearly doubling the price during that time. 

“Pharmaceutical companies set exorbitant prices while simultaneously blocking generic competition simply because they can,” Olson will say to the committee. “A common medicine needed by millions, like Eliquis, shouldn’t break the bank for seniors like me who live on a fixed income. I urge you to vote in support of Senate Bill 764 to bring much-needed relief to patients across our state.” 

SB 764 would prohibit an anti-competitive drug industry tactic called “pay-for-delay,” in which a brand-name drug maker cuts a deal with a generic company to delay the introduction of a lower-priced drug to market. The bill would also allow the Oregon attorney general to bring civil action against companies involved in such deals, with penalties up to three times the value of the drug or $10 million (whichever amount is greater).

Oregon patient advocate Michael Nielsen testified in front of the Senate Health Care Committee in support of SB 764 in March. Nielsen’s wife, Jacki, was diagnosed with the potentially fatal disease hepatitis C, and her medication is priced at more than $13,000 — or $433 per pill.

The hearing and Olson’s testimony can be watched here at 3:15 PM PT. 

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WASHINGTON, D.C. — Three patients will share their personal experiences with the high prices of prescription drugs sold by pharmaceutical giant AbbVie today before the House Committee on Oversight and Reform. The patient advocates will share their stories via recorded video during today’s hearing, “Unsustainable Drug Prices (Part III): Testimony from AbbVie CEO Richard Gonzalez,” held by the committee to examine AbbVie’s drug pricing behaviors.

“AbbVie has done everything in its power to keep raising prices on its blockbuster drugs,” said David Mitchell, a cancer patient and founder of Patients For Affordable Drugs Now. “Now Katherine, Jacqueline, and Lynn will tell Congress exactly the harm those high prices have caused to patients like them. It is time pharmaceutical companies including AbbVie are held to account for their abusive behaviors, and reforms are enacted to stop them.” 

Watch the patient advocates’ stories at the hearing here starting at 10:00 AM ET today. Below are some highlights of their stories:

• Katherine Pepper, from Bellingham, Washington, is diagnosed with psoriatic arthritis. She struggles to afford the Humira she is prescribed — the drug is priced at $5,900 for a pack of two pens. “The excessive Humira price forces me to choose every month whether to eat or fill my prescriptions,” she will tell the committee. “I urge you to consider patients like myself as you take action to lower the drug prices.”
• Jacqueline Garibay, from Austin, Texas, lives with ankylosing spondylitis. As a college student, she has to plan her future around her ability to afford her prescription drugs. Garibay was also prescribed Humira, priced at almost $6,000 for a month’s supply. “My dreams and my independence are threatened by having to constantly worry about affording my medication,” Garibay will explain. “I hope you will remember the millions of young people with chronic conditions who are facing a lifetime of daunting and ever-increasing treatment prices at the hands of companies like AbbVie.”
• Lynn Scarfuto, from Herkimer, New York, is a cancer patient who is prescribed the oral chemotherapy, Imbruvica, which is priced at $13,000 per month. She is worried that she will soon lose the ability to afford her prescription. “Instead of enjoying my retirement and focusing on my health, I carry around the overwhelming burden of Imbruvica’s price tag,” Scarfuto will say to the committee. “You have the power to change that by reining in the greed of the drug companies.”

AbbVie manufactures the blockbuster drugs Humira and Imbruvica. Humira, which treats many inflammatory conditions, is the world’s top-selling drug. AbbVie has increased the price of Humira 27 times since 2003 to more than $77,000 each year. Imbruvica, which treats cancer, is priced at more than $181,000 per year and has gone up in price nine times since its launch in 2013. 

AbbVie has a history of taking out many unnecessary patents on a singular drug in order to maintain market exclusivity longer to keep prices high — Humira is a prime example with 247 patent applications. AbbVie has been granted 88 patents for Imbruvica, which extends its commercial exclusivity to 29 years. It is expected that American patients will spend at least $41 billion on Imbruvica during the extra nine years of its monopoly.

The hearing, “Unsustainable Drug Prices (Part III): Testimony from AbbVie CEO Richard Gonzalez,” chaired by Rep. Carolyn B. Maloney, will examine the pricing and business practices of AbbVie. The hearing begins today at 10:00 AM ET and can be viewed here. Copies of the patients’ video and written stories are available upon request.

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If Bennifer can be revived, drug prices can be lowered.
Welcome to the Week in Review.

1. “The Time To Act Is Now”

• Rep. Peter Welch and P4AD founder David Mitchell penned an op-ed for The Hill that calls on Congress to pass H.R. 3, a bill that would finally let Medicare negotiate for lower drug prices. “Now is the time for Congress to pass legislation that will deliver meaningful relief from high drug prices to the American people,” they write. We can’t keep upholding a system that allows patients to die because they can’t afford the drugs they need. Congress must stand with patients and support H.R. 3. — (The Hill)

2.   Maine Fights Pharma Greed Statewide And Nationally 

• This week, Rep. Jared Golden (ME-02) authored an op-ed in the Bangor Daily News, warning Congress not to fall for Big Pharma’s lies as legislators look to make drugs affordable with bills like H.R. 3. “Big pharmaceutical companies’ greed stands in the way of progress to lower prescription drug prices,” Rep. Golden writes. Earlier in the week, the BDN editorial board praised Maine lawmakers for prioritizing lowering prescription drug prices this session. State legislators are currently considering a sweeping package of bills that would reduce prices for Maine patients. The message in Maine is clear — patients need relief. — (Bangor Daily News Opinion, Bangor Daily News Editorial Board) 

3. WV Senators: Patients Need You

• In a letter to the editor, West Virginia patient Ashley Suder calls on Senators Joe Manchin and Shelley Moore Capito to support H.R. 3. Ashley lives with lupus and depends on Benlysta, which costs over $35,000 — and figuring out how to afford the drug is a constant battle. Patients, already burdened with the physical and mental toll of living with an illness, shouldn’t also have to fight for affordable medications. For patients like Ashley, we must do better. — (The Charleston Gazette-Mail)

4. A Case Study: Cancer Drugs

• Cancer drugs are incredibly expensive, creating an astronomical financial burden on taxpayers. Because many of these drugs lack direct competitors, pharma companies essentially have free rein to dictate prices. Meanwhile, Big Pharma wants cancer patients and families to think high prices are the only way to ensure that new treatments keep coming to market. It’s simply not true. We don’t have to choose between affordable medications and new treatments. — (Fortune) 

5. Cracking The Innovation Myth

• Big Pharma, desperate to keep its unfettered pricing power, insists that Medicare negotiation bills like H.R. 3 would stifle innovation and prevent patient access to critical new drugs. The truth is, H.R. 3 would allow patients to get the important innovation they need at prices they can afford, and pharma would still remain one of the most profitable industries. Don’t fall for pharma’s bald-faced lie. — (Fast Company)

TRENTON — Patient advocate Lisa Wetzel-Trainor will testify today in front of the New Jersey Assembly’s Financial Institutions and Insurance Committee in favor of a bill that would protect New Jersey patients from high prescription drug prices. The bill A2418 establishes a prescription drug affordability board designed to review drug prices and cap costs when a drug presents an affordability challenge. 

Wetzel-Trainor, from Princeton, lives with fibromyalgia, PTSD, and ADHD, for which she is prescribed a very expensive prescription drug. “I’ve always lived in fear of what would happen if we were to lose coverage and have to pay the full cost of the drug. This past fall — in the middle of a terrifying pandemic — this fear became a reality,” Wetzel-Trainor will tell the committee.

When Wetzel-Trainor lost insurance coverage for Vyvanse, a drug that she depends on to maintain her quality of life, she was forced to go off the medication entirely. The drug has a price tag of over $1,000 each month. Even on a different, less effective medication, Wetzel-Trainor faces $150 per month for her drug. 

“Paying $150 for my medication means $150 less for groceries, our mortgage, and other monthly expenses. Instead of focusing on my health, I worry about how I’ll cover the cost of my next prescription,” Wetzel-Trainor will say. 

“I urge New Jersey lawmakers to stand up and support A2418 to ensure patients are not priced out of the medications they need to survive and afford us the quality of life we all deserve.”

A2418 would establish a prescription drug affordability board and stakeholder council designed to review prices for prescription drugs that meet specified cost criteria. The board would: 

• Identify drugs based on manufacturer reporting, including:  
  • Increases to the wholesale acquisition cost of any brand-name drug by $3,000 or more during a 12-month period;
  • Drugs coming to market at a wholesale acquisition cost of $30,000 per year or more per course of treatment;
  • Generic drugs with a wholesale acquisition cost of $100 or more;
  • Existing generic medications that increase in price by 200 percent or more per year or per course of treatment.
• Recommend an upper payment limit or establish a drug importation program if a drug presents an affordability challenge.

The hearing and Wetzel-Trainor’s testimony can be watched here at 10:00 AM ET. 

Following this discussion-only hearing, the committee will hold a voting hearing on the bill on June 2. 

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WASHINGTON, D.C. — Congressman Peter Welch of Vermont and David Mitchell, a cancer patient and founder of Patients For Affordable Drugs, penned an op-ed in The Hill that calls on Congress to pass H.R. 3 to lower drug prices through Medicare negotiation. The piece is in response to President Biden’s strong commitment to lower prescription drug prices and the House’s reintroduction of H.R. 3, the Elijah E. Cummings Lower Drug Costs Now Act, a package of drug pricing reforms that includes allowing Medicare to negotiate for lower prices for all Americans. Read the full piece below.

Allow Medicare to negotiate on behalf of patients to lower drug prices
By Congressman Peter Welch and David Mitchell
May 12, 2021

President Biden’s speech announcing his American Families Plan reaffirmed his strong support for legislation to lower drug prices through Medicare negotiation. “Let’s give Medicare the power to save hundreds of billions of dollars by negotiating lower drug prescription prices,” he said. “Let’s do it now.”

President Biden is right. After nearly two decades of rising drug prices under a system in which drug corporations can dictate prices of brand-name drugs, Americans need the relief they have been promised.

Millions of patients need help — patients like 62-year-old Lucinda in Richmond, Vt., who has lived with rheumatoid arthritis since she was a teenager. To manage her symptoms, she was prescribed Simponi, methotrexate, and prednisone. The prices of these prescriptions have continued to increase each year since she was diagnosed as a teenager, coming to a total of $59,000 in 2019.

Lucinda’s story is not unique. Patients For Affordable Drugs has collected tens of thousands of stories of Americans who are skipping doses, cutting pills in half, rationing insulin, or choosing between paying the bills and buying the drugs they need. Americans are paying almost four times what people in other wealthy nations pay for the exact same brand-name drugs. As the president said, the time to act is now.

Democrats in the House of Representatives aren’t missing a beat. Last week, H.R. 3, the Elijah E. Cummings Lower Drug Costs Now Act, was reintroduced. This bill would allow Medicare to negotiate lower prices on behalf of all Americans, prevent price gouging, and direct more money to the National Institutes of Health (NIH) for critical research to ensure innovation and new drug development.

H.R. 3 would limit the annual out-of-pocket costs for Medicare beneficiaries to no more than $2,000, and would establish a top negotiated price for drugs at no more than 120 percent of the average of six other wealthy nations. The bill would penalize drug companies that increase prices faster than the rate of inflation.

The CEO of the trade association PhRMA recently complained that it should not be used as a piggy bank to fund other priorities. But it’s Big Pharma that has been using patients and taxpayers as piggy banks, raising prices at will to fund profits and trigger executive bonuses. Pharma’s chief lobbyist is right about one thing, however: America has other priorities. Every dollar we send to pharma in unjustified profits is a dollar we don’t have to tackle health care disparities, provide coverage to the uninsured, or fund research into new medicines aimed at improving public health instead of private profits.

H.R. 3 would support and protect innovation and new drug development by investing some of the expected savings into the world-class research funded through the NIH. The federal government is the primary source of basic research in biomedical sciences, and NIH funding is crucial to basic research that leads to the discovery of new drugs, as noted by the Congressional Budget Office. The most innovative new drugs are coming from investment by taxpayers through the NIH.

Most urgently, people are dying right now because they can’t afford the existing drugs they need. More than 1.1 million Medicare patients could die over the next decade because they cannot afford to pay for their prescriptions. If Medicare were empowered to directly negotiate prices with drug companies, there could be 94,000 fewer deaths annually just because people would be able to afford their drugs.

The reforms in H.R. 3 are widely supported. Ninety-three percent of Americans agree that Medicare should have the power to negotiate with drug companies for lower prices. It’s an issue that overwhelmingly unites Democrats, Republicans and independents.

Congressional support is not far behind. Speaker Nancy Pelosi (D-Calif.) has made clear her intention to include H.R. 3 in the American Families Plan. Sen. Ron Wyden (D-Ore.), who chairs the Finance Committee that will advance drug price legislation, has made clear his support for Medicare price negotiations.

We have an opportunity to, finally, make drug prices affordable if we stand with patients and stand up to Big Pharma. Now is the time for Congress to pass legislation that will deliver meaningful relief from high drug prices to the American people. With President Biden’s support, this is the year we will lower drug prices for Americans struggling to afford their medications.

Congressman Peter Welch has served Vermont’s at-large congressional district since 2007. David Mitchell is a cancer patient and founder of Patients For Affordable Drugs, the only national, bipartisan patient organization focused solely on policies to lower drug prices.

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My name is Ronnie Rountree and I’m from Waycross, Georgia. Every 90 days, I owe $450 for 11 medications to treat the five conditions I live with: glaucoma, atrial fibrillation, high blood pressure, high cholesterol, and arthritis. Including the Social Security and pension I receive from the state of Georgia, my income is about $2,500 a month. So $450 is a big financial stretch for a retiree like me. In order to afford the prescription drugs I need now, I cut back on food I want to eat –– I get by by only eating the food I truly need to survive, and what I can afford.

The most expensive of my drugs are my eye drops. To afford these drugs that treat pressure and pain and help to preserve my vision, I pay $135 every 90 days for Cosopt, Alphagan, and Travatan. And that cost is very unpredictable –– every three months when the bill comes, I’m constantly worried that the prices might have been raised this time. 

The question crosses my mind every day: “What’s going to come up tomorrow?” I was just recently diagnosed with atrial fibrillation and additional lung issues, which might require even more medications. I’m constantly worrying and stressing about my budget, scared to spend money since I don’t know how much more I will need to spend on my medications.

I do know we should have cheaper drugs in the United States. People in other countries are able to get drugs for lower prices, so I know it can be done. I want my elected representatives to do something about drug prices. Please, care for retired people like me. Lower the prices of our prescription drugs.

Make Mom proud: Lower drug prices, Big Pharma.
Welcome to the Week in Review.

1. America Needs H.R. 3

• This week, P4ADNow founder David Mitchell delivered testimony to a House Education and Labor subcommittee, urging members of Congress to support H.R. 3 and explaining that the legislation would restore balance to our drug pricing system to ensure innovation and affordability. Patient advocate Therese Ball also shared her story in testimony before a House Energy and Commerce subcommittee, calling on Congress to allow Medicare to negotiate for lower drug prices on behalf of patients like her. “I had a front-row seat to the horrifying reality of our drug pricing system,” Therese told the subcommittee. “Drugs don’t work if people can’t afford them.” — (Cox Media Group, Sinclair Broadcast Group)

2.  Top Of The List

• Congressional leadership is planning to take on the “most powerful lobbying group in Washington” and pass legislation to reduce prescription drug prices this year — and the political environment in D.C. means they might have a real chance of getting it done. The vast majority of Americans agree passing such legislation should be a priority for Congress. It’s time to relieve the burden of high drug prices for all Americans. — (HuffPost)

3. Pharma Showers Congress In Cash

• In a signal that Big Pharma knows change is on the horizon, the industry is doing everything it can to fight against lower drug prices, pouring a record $92 million in the first quarter of 2021 into lobbying. Big Pharma is continuing its spending trend in the second quarter — just this week, the industry launched a $4 million dark money campaign loaded with lies to attack H.R. 3. Patients are continuing to make their voices heard to remind legislators to stand up for millions of Americans being crushed at the pharmacy counter. — (FiercePharma) 

4. Advance The Affordability Board

• On Friday, the Colorado Senate passed a bill that would establish a prescription drug affordability board with the power to set upper payment limits. The measure is extremely popular, with polls showing that 3 in 4Colorado voters support the creation of a board to rein in drug prices. Now, the Colorado House must take on the mantle and move quickly to advance the bill and protect patients across the state. — (KUSA) 

5. “Something Has To Change”

• In an op-ed, Maine patient advocate Sabrina Burbeck describes her family’s experiences with unaffordable drug prices, including the high price of her son’s Humalog insulin. She calls on the Maine legislature to pass a package of drug pricing bills that would make medications more affordable and hold drug companies accountable. “No mother should have to worry if the life of her bright, loving, and curious child will be cut short because the price of their medication spikes overnight or they simply can’t afford it one month,” Sabrina writes. — (Portland Press Herald) 

DENVER — The following statement was issued by Lucy Westerfield, deputy executive director of Patients For Affordable Drugs Now, after the Colorado Senate passed SB 21-175, which would establish a prescription drug affordability board designed to deliver relief to Coloradans suffering from high drug prices: 

“For far too long, Coloradans have faced the outrageous prices of prescription drugs, forcing many to skip doses of their medications or simply go without. We applaud the Colorado Senate for passing SB 21-175, which would offer relief to Colorado patients by creating a prescription drug affordability board that reins in high prices. On behalf of patients, we urge the Colorado House to move quickly to advance this bill.”

Background:

• SB 21-175 would create a prescription drug affordability board that would: 
  • Perform affordability reviews of prescription drugs.
  • Establish upper payment limits for prescription drugs that are determined to be unaffordable for Coloradans.
  • Investigate, review, and establish more affordable prices for the most expensive and unaffordable prescription drugs.
  • Investigate and review when drug companies sharply increase the price of a specific drug.
• Colorado patient Kris Garcia, who lives with multiple bleeding disorders including hemophilia, advocated for SB 21-175 at a recent press conference. Garcia relies on a medication called Humate-P, which costs $10,000 per vial. 
• SB 21-175 will head next to the Colorado House in the coming weeks.

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