On the 10th anniversary of his multiple myeloma diagnosis, David Mitchell, the founder of Patients For Affordable Drugs, reflects on his journey and the power of the patient voice in calling for lower drug prices. “Cancer broke my back, but it stiffened my spine. And every day I am inspired by my fellow patients in this fight. They are the key to change. They are the reason we will win.” — (Morning Consult)
2. Send Him Packing
As candidates across the country commit to lowering drug prices, one senator stands apart from the rest in his refusal to do so: Senator Thom Tillis from North Carolina. Tillis has repeatedly backed pharmaceutical companies instead of standing up for patients. — (STAT)
3.Risky Investments
The federal government is paying Eli Lilly $375 million for 300,000 doses of its potential COVID-19 treatment, with the option of securing 650,000 more doses for an additional $812.5 million. At $1,250 per dose, it’s a hefty price to pay for a drug that U.S. taxpayers helped to develop. — (Reuters)
4. Paying in Advance
Medicare and Medicaid beneficiaries will receive FDA-approved COVID-19 vaccines without paying additional out-of-pocket fees, according to a new policy announced by the Trump administration Wednesday. This is welcome news, but let’s not forget that taxpayers have already paid billions of dollars for vaccine development. — (The Hill)
5. The Very Definition of Pandemic Profiteering
Pharma executives at a dozen companies making COVID-19 vaccines and treatments have cashed in $1.3 billion worth of stock since March. What’s worse, companies like Moderna have $2.5 billion in taxpayer cash committed to test, produce, and eventually sell 100 million doses of its vaccine candidate right back to the government that fully funded it. Taxpayers are taking on the risk — while drug company insiders get rich. — (The Boston Globe)
My name is Sherry and I’m from Oro Valley, AZ. I take a drug called Topamax to treat my intense migraines, but it’s so expensive that I have to cut down on other areas of my life.
I’ve been taking Topamax for 25 years, and back then, I remember paying around $50 for a 30-day supply. These days, it costs about $280 out-of-pocket for a three-month supply, even after insurance coverage. I have to continue using the brand-name drug because the generic doesn’t control my migraines as well.
I don’t have any choice but to keep using Topamax because it really reduces the number of migraines I get. Without this medication, I’m completely non-functioning. My migraines can last for up to four days and prevent me from working and carrying out my daily routines. When I get a migraine, the lights are blinding and I’m constantly nauseous. It feels impossible to think and it’s even painful to lie down — you don’t want your head to touch anything. Topamax allows me to live a more normal life.
Topamax is the most expensive medication I take, but I’ve seen the prices of my other drugs increase as well. Ascomp with codeine, another medication for headaches, costs $30 for a month’s supply even though it used to cost $5. Similarly, Synthroid now costs $20 instead of $6 for a 90-day supply. These expenses take a big hit on my budget and make it impossible to put money away for emergencies.
Drug companies are ripping off older people simply because they can. I’m sick and tired of working for what I have and losing everything because I need to pay for my medications. And yet it doesn’t feel like anyone is paying attention to this issue. It’s time for our lawmakers to take care of America’s seniors and work on getting drug prices down once and for all.
TEN days to go. Welcome to the Week In Review.
1.Dubious Discount Cards…Disappear?
The Trump administration’s vow to deliver $200 drug coupons to Medicare beneficiaries before Election Day is a no-go, according to Medicare officials. Such a move may violate election law and has triggered congressional requests to review the plan. What Americans desperately need now is lasting reform to lower drug prices, not another political ploy that changes nothing for the millions of people suffering under Big Pharma’s greed. — (The New York Times)
2. Stage Set for Drug Pricing Reform in 2021
In 2021, Congress is expected to continue its push to lower drug prices that was — understandably — interrupted by the COVID-19 pandemic. Regardless of the makeup of the 117th Congress, one thing is certain: Our legislators must work together to stand up to Big Pharma and provide relief to all Americans. — (FierceHealthcare)
3.Double-Charged in a Pandemic
Billions of dollars in federal funding flowed to pharma’s coffers to develop COVID-19 vaccines. Now, pharma plans to charge Americans a second time for the taxpayer-funded doses and make a killing on the public investment. This game is rigged — we’re being set up to pay twice. — (Salon)
4. Oh, COME ON
The FDA on Thursday approved Gilead’s COVID-19 drug remdesivir, only days after data from a WHO megastudy suggested the drug had “little to no” effect on COVID-19 patients and did not prevent death. Even so, one course of treatment for the taxpayer-funded drug is $3,120, a price that ignores the massive taxpayer support that prompted its creation. Accessibility to an expensive COVID-19 treatment with mixed reviews shouldn’t be one more thing we need to worry about. — (STAT)
5.Milking Mayhem
Pfizer could make as much as $3.5 billion next year from its potential COVID-19 vaccine and $1.4 billion in the years following, according to analysts. Drug corporations are treating this unprecedented public health crisis as a way to cash in. — (FiercePharma)
NASHVILLE, Tenn. — During tonight’s presidential debate in Nashville, Vice President Joe Biden promised to stand with patients and let Medicare negotiate for lower drug prices.
“Drug prices are a top issue for voters, and we appreciate Vice President Biden emphasizing his plan to lower prices, promote competition, and let Medicare negotiate,” said Ben Wakana, executive director of Patients For Affordable Drugs Now.
Vice President Biden: “We’re going to make sure we reduce the premiums and reduce drug prices by making sure that there’s competition that doesn’t exist now by allowing Medicare to negotiate.”
BACKGROUND:
Nearly 9 out of 10 voters say lowering prescription drug prices is a top health care issue deciding their 2020 presidential vote.
86 percent of Americans support “allowing the federal government to negotiate with drug companies to get a lower price on medications for people on Medicare.”
According to the University of Pennsylvania, Vice President Biden’s proposals would lower average prescription drug prices by roughly 60 percent.
Vice President Joe Biden’s plan to lower drug prices has several key components:
Allow Medicare to negotiate for lower prices and limit price increases for brand-name drugs to the rate of inflation
Create policies to counter anti-competitive practices like “pay-for-delay” deals, patent thickets, and evergreening
Evaluate the role of taxpayer investments in R&D and factor it into pricing decisions
Drug prices are continuing to rise, with increases on over 500 drugs in January 2020 alone and nearly 250 additional drugs in the first six months of the COVID-19 pandemic.
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WASHINGTON, D.C. — Patients across the country are calling on President Trump and former Vice President Biden to discuss their plans to lower the prices of prescription drugs at the final presidential debate in Nashville Thursday.
“Ever increasing drug prices continue to hurt Americans all across the country,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “And with the pandemic stealing lives and livelihoods, voters need to hear from the candidates about how they will lower the prices of prescription drugs. We will be listening as the candidates lay out their final arguments Thursday — to hear how they will fight for patients and stand up against pharma.”
According to the Kaiser Family Foundation, nearly 9 out of 10 voters say lowering prescription drug prices is a top health care issue deciding their 2020 vote. And, 35 percent of voters say drug pricing is among their “most important” voting issues, according to Gallup.
Patients in 15 key battleground states have shared stories of the impact skyrocketing drug prices have had on their lives. Here’s a sample of what patients across the country want the presidential candidates to understand:
Blythe Kauhn, Chandler, AZ, type 1 diabetes: “I feel like more people need to understand that it’s not cheap to have conditions that don’t go away. We don’t get to say, ‘Oh, I don’t want to have diabetes this month.’”
Kris Garcia, Denver, CO, bleeding disorders: “When you cast your ballot, make sure your candidate has a plan to lower drug prices.”
Clayton “DJ” Martin, Jacksonville, FL, sickle cell disease: “As a father with sickle cell, with a daughter with the sickle cell trait, I worry about her future because of the high prices of drugs.”
Patricia McKenzie, Lithonia, GA, type 2 diabetes: “People have to choose between eating and their medications. They have to choose between life and death. And that should not be a choice. Not here in America.”
Jacquie Persson, Waterloo, IA, Crohn’s disease: “I’m voting for candidates who will stand up to Big Pharma and lower the prices of prescription drugs.”
Tammy de la Cruz, North Las Vegas, NV, chronic inflammatory demyelinating polyneuropathy: “The cost of this medication is anywhere from $1,000 to $1,500, and I get it every week. Without it, I fear I will become paralyzed again.”
Rose Keller, Concord, NH, cystic fibrosis: “The high cost of drug prices has stripped me, and other young patients like me, of the opportunity to dream about what we might be when we grow up.”
Don Kreis, Concord, NH, Rose’s father: “For my sake, and for the sake of my daughter, I hope you will vote for candidates who fight Big Pharma and stand up for lower drug prices.”
Steven Hadfield, Charlotte, NC, blood cancer: “The doctor has recommended me to work less. But I live in fear over my high drug prices.”
Sophie, 19, Grand Rapids, MI, type 1 diabetes: “It’s going to be my first time voting this year. Prices of drugs have a huge effect on my vote.”
Hazel, 12, Grand Rapids, MI, type 1 diabetes: “I hope you’ll vote for candidates who will fight for lower drug prices.”
Travis Paulson, Eveleth, MN, type 1 diabetes: “Since the pandemic has started, we’ve been forced to buy our medications and insulin at the extraordinary prices they charge here in the U.S.”
Heidi Kendall, Missoula, MT, chronic myeloid leukemia: “It’s scary to depend for my life on a drug that costs so much.”
Kolton Chapman, Pickerington, OH, ulcerative colitis: “When I was on Entyvio, I was responsible for paying $2,000 a month. It was more than I owe in student loans, so I ended up filing for bankruptcy because of my medical debt.”
Rachel Burnett, Pittsburgh, PA, Crohn’s disease: “It’s so unfair to have these illnesses, and it’s so unfair to have to pay so much just to stay alive.”
Candice Brown, Alexandria, VA, ulcerative colitis: “This drug pricing system was not meant to benefit me as a patient. It was meant to benefit Big Pharma.”
Leah Clark, Columbus, WI, Crohn’s disease: “I have big plans for my future, and I can’t afford to have the high cost of drug prices getting in the way of my accomplishments.”
In September, Patients For Affordable Drugs Now launched a national campaign lifting up the voices of patients who are calling on voters to support candidates who will stand up to Big Pharma and fight to lower prescription drug prices. The campaign features TV, radio, and digital ads alongside tools to give grassroots patient advocates the power to engage with candidates on the issue of drug prices. P4ADNow is an independent, bipartisan patient organization focused on policies to lower drug prices. It does not accept funding from any organizations that profit from the development or distribution of prescription drugs.
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We need Clare-ity on drug prices.
1.Follow the Money: Pharma Peddles Influence in State Races
Big Pharma’s tentacles are reaching into the industry’s deep pockets, throwing millions in cash donations at state candidates’ races across the country to prevent state legislatures from passing drug pricing reform, a comprehensive investigation into the money flow found. Pharma may have the cash, but we must use our voices and votes to call on our legislators to stand up to drug companies and protect us from predatory pricing. — (STAT News)
2. Drug Pricing on the Ballot
On Tuesday, Patients For Affordable Drugs Now hosted a presidential town hall on drug pricing featuring representatives from the Trump and Biden campaigns and moderated by Kaiser Health News’ Elisabeth Rosenthal. We are grateful for their participation in a substantive conversation about how to lower drug prices — a top issue for many voters heading to the ballot box. Watch the full event here. — (Patients For Affordable Drugs Now)
3.Taxpayer Cash Flows to Pharma
AstraZeneca received $486 million from the U.S. federal government for the development and supply of 100,000 doses of its COVID-19 antibody treatment. Let’s add it to the growing list of vaccines and treatments that taxpayers have funded — we deserve to see our investments reflected in the final price. — (Reuters)
4. Transparency Needed
The government has awarded billions of dollars in COVID-19 vaccine deals to drug companies through a third-party organization, bypassing typical contracting and leaving American taxpayers in the dark about how their money is being spent. Taxpayers need transparency now. — (NPR)
5. Betting on Pandemic PR
The drug industry is betting its outsized role in the COVID-19 pandemic will buoy reputations and profits — not to mention increase political leverage as the companies face drug pricing reforms. Pharma’s work on vaccines and treatments does not erase the industry’s history of abusive pricing and monopolistic behavior. We must stay the course and continue our work to hold Big Pharma accountable and lower drug prices. — (The New York Times)
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.
STAT NEWS: “First-of-its-kind examination shows how widely pharma showers campaign cash at the state level”
HOUSTON CHRONICLE: “Prescription drug costs take center stage in Texas races for Congress”
“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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We at Patients For Affordable Drugs Now are heartbroken to learn of the passing of Clayton “DJ” Martin, 33, a Jacksonville, Florida father and sickle cell warrior.
DJ was a fierce advocate with Patients For Affordable Drugs Now. He was dedicated to fighting for an affordable and accessible cure for sickle cell. He graciously shared his fight with us, saying:
“As a result of sickle cell, I have also been diagnosed with avascular necrosis in my left hip and end-stage renal failure. It took me about seven years to complete my bachelor’s degree due to the setbacks and complications that come with sickle cell. An affordable cure would be monumental and would totally alleviate the pain many patients go through. Everybody who needs this cure should be able to get it, regardless of price.”
In October 2019, he visited the Washington, DC offices of his federal lawmakers to advocate for legislation that would make drugs more affordable. And earlier this year, in the midst of the COVID-19 pandemic, DJ penned a column for The Orlando Sentinel, about the impact Big Pharma has on Americans in the midst of a global pandemic.
“If big pharma is allowed to retain systematic control of the drug industry during this pandemic, it will not be just you or me that suffer the consequences, but the country as a whole,” Martin wrote. This September, DJ told his story with Florida voters in a video where he shared his love and worry for his daughter, who also lives with the sickle cell trait. He called on his fellow Floridians to join him in electing candidates who fight for patients like him.
DJ’s advocacy did not start nor stop with P4ADNOW, instead he spent his life dedicated to advocating for the lives of everyone fighting sickle cell. He founded the Benjamin Ivory Foundation to bring awareness to sickle cell and advocate for optimal health to people living with it — all in the name of his friend and fellow sickle cell warrior, Benjamin Ivory Reddick.
DJ Martin is the epitome of the advocate we all strive to be. He was kind, dedicated, and caring. We are so lucky that he devoted so much of his time to fighting for affordable drugs prices. His death is a loss to our movement, but he inspires us to carry on.
Our heart goes out to DJ’s family, friends, and all of the people whose lives he touched. He will be missed.
