My name is Janet Schwartz, and I’m a retired nurse from Newark, DE. I’m 74 years old and was finally diagnosed with multiple sclerosis at 59 years old after experiencing symptoms, like nerve and joint pain, for a very long time. I also have type 2 diabetes. The price of my medications has tarnished what are supposed to be my golden years. I have adult children and I don’t want them to have to pay for my drugs and worry about me. I didn’t have children because I wanted to be taken care of in my old age. I just want them to be happy. I just want to afford my prescription drugs.
My name is Barbara Bultman. I have 8 kids, 19 grandchildren, and 8 great-grandchildren. When I’m not with my family, I love to spend time with my longtime group of girlfriends. I have issues with my lungs, so my doctor wrote me a prescription for multiple inhalers. I never expected to have to worry about the cost of medicine, but it’s now something that is constantly on my mind. I ration my inhaler and it affects my health and my lungs. I get scared and it causes stress, which only worsens my health. Life is hard when you’re sick and aging. I hope every day that I will receive help and be able to afford my medication.
My name is Tammy L. de la Cruz. I live with a rare autoimmune disorder, and to treat my condition, every week I receive Intravenous Immunoglobulin (IVIG) treatment. I would become paralyzed without this treatment, which terrifies me. I have eight grandkids and love helping them out. I volunteer with my local food pantry and with a social service agency that serves those that have intellectual and developmental disabilities. I love coloring, reading, and up until a few months ago I attended college full time –– and thanks to my IVIG treatments, I was able to walk across the stage to get my BS in Psychology. Not being able to afford my treatment would have made these enjoyable hobbies more difficult, if not impossible, for me. I found a grant at the 11th hour, saving myself from paralysis. I know the future of this grant funding is not guaranteed. People with illness shouldn’t have to work so hard to fund extreme drug costs; it’s cruel. Patients like me shouldn’t have to rely on grants to cover the cost of our treatments. We shouldn’t have to deal with the uncertainty of constantly changing costs and the concerns of what will happen if we lose access to our grant and therefore our prescriptions. No one should have to experience the feeling of hopelessness I felt when I thought I wouldn’t be able to afford the treatment I needed. It doesn’t have to be like this. We need changes to our system that make prescription drugs more affordable.
My name is Kolton Chapman. I am a transgender man living with a chronic illness. My life hasn’t always revolved around my illness –– I am an artist who enjoys coloring books and helping people design logos and other items to help with their businesses.
I was diagnosed with ulcerative colitis and moyamoya disease, a rare blood vessel disorder.
My main priority should be focusing on my health –– not on bills and making ends meet. But unfortunately, with high prescription costs, their prices and my medical debt always factor into my decisions.
My life path has been completely altered by expensive prescription drugs and drug company greed. I often feel like I’m behind all of the people my age — even people younger than me — because I’ve had to focus my time and money on staying alive. We shouldn’t have to give up on pursuing a college education because of crippling medical debt. We shouldn’t have to make every financial decision with the cost of prescriptions and medical debt in the back of our minds. Things can be better if our leaders rein in drug companies’ greed and make the needs of patients like me the priority.
My name is Kris Garcia and I’m from Denver, Colorado. I have four bleeding disorders, asthma, and several allergies. Having multiple bleeding disorders, including hemophilia, leaves me in a constant position of uncertainty. I have to be incredibly careful, as any emergency can quickly turn into both a health and financial crisis. Since cauterization is more difficult with my bleeding disorders, I rely on Humate-P should an emergency occur. But the astronomical cost of these drugs only increases the stress of an emergency. Each vial of Humate-P costs $10,000, and for each infusion, I would need four vials.
I shouldn’t have to live in constant fear of a medical emergency also bringing financial ruin to me and my family. These astronomical drug prices have affected decisions in my life and have created a fear of financial ruin. Manufacturers get tons of government funds to produce drugs, but still profit off their patents and charge us unreasonable prices. We need changes to reduce these unaffordable prices so that people like me don’t live in a state of constant fear of whether we’ll be able to access our prescriptions.
2023 is looking brighter than ever between Rihanna at the Superbowl and the $35 insulin copay caps for Medicare beneficiaries.
Welcome To The Week In Review (a day early, as P4AD is closed today).
On Tuesday, patient advocate Bob Parant, a Medicare beneficiary who lives with type 1 diabetes, shared his story about the high price of insulin at the White House, where he introduced and thanked President Biden for lowering drug prices with the Inflation Reduction Act. Bob lives in New York and takes the insulin Humalog, which costs him $300 out-of-pocket every 90 days. “Insulin cost is inhumane,” Bob shared ahead of introducing the president. “But thanks to President Biden and Democrats in Congress, the reforms in the Inflation Reduction Act will save me, and millions others, hundreds, and in some cases, thousands of dollars a year. The Inflation Reduction Act will allow me to do things I cherish – be able to travel to see my grandkids and also worry less about depleting my retirement savings.” During his remarks about lowering health care costs, the president shared, “From now on, if you’re on Medicare and you have diabetes, the cost of insulin can be capped at $35 a month per prescription – Bob just told you what a difference it’d make and is gonna make in his life.” President Biden also committed to continuing to fight to extend the reforms in the Inflation Reduction Act to more Americans. We are grateful to Bob for sharing his story and to President Biden for continuing to fight for patients. — (P4ADNow, Spectrum News)
2. Drug Reforms Bring “Peace Of Mind”
Patients and advocates across the country continued to celebrate the life-changing drug price provisions in the Inflation Reduction Act that will bring relief to Americans. “With the health provisions in the Inflation Reduction Act comes the peace of mind that I will be able to afford my prescription medications and be one step closer to retiring,” shared Bernetha Patterson, a Georgia Medicare patient who lives with Type 2 diabetes. Steve Zuelke, a patient in Nevada, wrote, “A wealthy CEO is not worried about drugs costing $2000 a month. But for a working-class person? That price tag can be the difference between paying their utility bill or refilling a monthly prescription.” In Pennsylvania, AARP’s state director explained how the Inflation Reduction Act’s drug price provisions prove to be “a historic victory, and it couldn’t come at a more needed time.” And Washington’s AARP state president wrote, “For the first time in decades, Big Pharma’s relentless grip on their wallets, medicine cabinets and peace of mind will begin to be pried loose.” — (American Independent, Nevada Current, Penn Live, 3rd Act Magazine)
3. Pharma Putting Profits Over Patients
Big Pharma won’t stop at anything to drive up profits. In the latest pharma settlement, Biogen is accused of paying kickbacks to doctors over a five-year span to boost sales of its multiple sclerosis (MS) drugs. This week’s $900 million deal was the second lawsuit the company has faced for trying to boost MS drug sales through unethical schemes. Last year, Biogen settled a $22 million deal in which they were accused of giving Medicare patients illegal copay assistance in an effort to drive more patients toward their MS medications. A new report released from Skaggs School of Pharmacy and Pharmaceutical Sciences at University of California San Diego examined Big Pharma’s notorious claim that high research and development costs necessitate high drug prices in the United States. The results? Researchers found no link between the two. As usual, it’s more fear mongering from Big Pharma – but patients know the industry only cares about lining its executives’ pockets, period. — (Fiercepharma, EurekaAlert!)
Bob Shared His Story About High Insulin Prices At White House Event Highlighting President Biden’s Work To Lower Health Care Cost
WASHINGTON, D.C. — Patient advocate Bob Parant, a Medicare beneficiary who lives with type 1 diabetes, shared his story about the high price of insulin at the White House today where he introduced and thanked President Biden for passing the Inflation Reduction Act and lowering insulin costs for Medicare beneficiaries. The president delivered remarks about lowering health care costs through the Inflation Reduction Act, which was signed into law last month.
Bob, a New Yorker who was diagnosed with type 1 diabetes 50 years ago, takes Humalog – which costs him $300 out-of-pocket every 90 days. He explained that the price of insulin has increased by over 600 percent in the last 20 years.
“Insulin cost is inhumane,” Bob shared ahead of introducing the president. “But thanks to President Biden and Democrats in Congress, the reforms in the Inflation Reduction Act will save me, and millions others, hundreds, and in some cases, thousands of dollars a year…The Inflation Reduction Act will allow me to do things I cherish – be able to travel to see my grandkids and also worry less about depleting my retirement savings.”
The provisions in the Inflation Reduction Act will, for the first time, allow Medicare to negotiate lower drug prices, curb drug company price gouging by limiting annual price increases to the rate of inflation, cap out-of-pocket costs for Medicare Part D beneficiaries at $2,000 in 2025, and limit monthly insulin copays to $35 per month for Medicare enrollees starting next year.
“From now on, if you’re on Medicare and you have diabetes, the cost of insulin can be capped at $35 a month per prescription – Bob just told you what a difference it’d make and is gonna make in his life,” said President Biden at today’s speech. “We pay more for prescription drugs than any other advanced nation in the world and there’s no good reason for it. For years, many of us have been trying to fix this problem. But for years, for years, Big Pharma has stood in the way. Not this year – this year the American people won and Big Pharma lost.”
“We are grateful to Bob for sharing his story today and to President Biden for continuously elevating the voices of patients,” said Merith Basey, Patients For Affordable Drug Now’s executive director. “Beginning in 2023, millions of people like Bob who are on Medicare will begin to feel some much needed relief as monthly insulin copays are capped as a result of the historic Inflation Reduction Act. Rest assured that we will keep fighting to lower drug prices for everyone – including the uninsured and those who have insurance in the private sector.”
Watch Bob’s remarks and the president’s full speech here.
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What do drug prices and leaves have in common? They both are getting ready to fall. ?
The Week in Review in Prescription Drug Pricing
Welcome, Merith!
We’re thrilled to welcome Merith Basey as our new executive director here at P4AD! Her arrival comes at a key moment when sweeping reforms to the U.S. drug price system are being implemented and advocates are turning to other key policies to ensure patients and all Americans can afford the drugs they need. “Our number one challenge will be that the pharmaceutical industry is not going to quit overnight,” Basey told STAT in an interview. “They’ve spent hundreds of millions of dollars to prevent Medicare negotiation, and we know that Patients For Affordable Drugs won’t be stopping either.” In a video, Merith also shared her commitment to health equity, which began nearly two decades ago working alongside young people living with type 1 diabetes in Ecuador. “I believe that no one should be poor because they are sick, and nobody should be sick because they are poor,” she shared. “Merith brings extensive knowledge and skill,” our founder David Mitchell stated. “She is a great fit for our organization and will add fresh perspectives that will strengthen us for the future.” — (STAT, P4AD Twitter, P4AD)
2. Celebrating Wins For Patients
MembersofCongress, academics, advocates, and patients continued to celebrate how the drug price reforms in the Inflation Reduction Act will help patients afford their medications. “After years of candidates going out on the campaign trail and telling America that the cost of prescription drugs were too high, we finally did something about it,” Senator Durbinremarked. Senator Baldwin said, “This is real, life-changing relief for working families.” Rep. Golden shared, “Reducing government spending on health care through prescription drug negotiations… is going to put downward pressure on inflation.” Advocatescelebrated the historic win, saying, “For the first time in decades, Big Pharma’s relentless grip on their wallets, medicine cabinets and peace of mind will begin to be pried loose.” Brenda Dickason, a retired Tucson police detective and teacher and small business owner, explained how she’s had to make tough choices in order to afford her medication. Brenda told PBS, “So I have to make a choice: Do I go without the EpiPen, or do I buy supplies I need for my job?” The Inflation Reduction Act will provide relief from high prices to millions of patients like Brenda. — (The Filipino Chronicle, Modern Healthcare, Bitterroot Star, Stanford Law School, Senator Durbin, Modern Healthcare, WMTW, Michigan Chronicle, Finger Lake Times, The Daily Sentinel, AZ PBS)
3. Big Pharma Shenanigans
Bluebird bio broke its own drug pricing record this week after a green light from the FDA for a gene therapy called Skysona. The new record? $3 million per treatment. Skysona is the latest drug in a new trend of specialized gene therapies coming to market at outrageous launch prices that put profits ahead of the needs of patients and the ability of our system to pay. Big Pharma is up to no good with its old drugs too, abusing the patent system to keep drug prices high for patients and to line the industry’s pockets. As Novartis prepares for generic alternatives to its multiple sclerosis drug Gilenya to come to market, the company plans to ask the Supreme Court to take up its drug patent case after an appeals court deemed a Gilenya patent invalid. “If generics launch this year, Novartis expects a $300 million hit to its 2022 revenue guidance,” FiercePharma reports. In an op-ed, Professor Michael Carrier describes a new loophole in the system that Big Pharma is using to maximize profits and keep generics from coming to market. A new ruling puts drug companies in a catch-22, forcing a choice between infringing on the patent or breaking federal drug labeling mandates. “Other generic makers are unlikely to take the same risk against patent holders, leaving patients paying monopoly prices on what ought to be off-patent drugs,” Carrier explains. “These results harm the most vulnerable patients who may not be able to afford high-priced brand drugs.” The common thread throughout? Bigger profits for pharma and high prices for patients. — (FiercePharma, Reuters, FiercePharma, Los Angeles Times)
