Doug’s Story

My name is Doug Lusty and I was born and raised in Salt Lake City and am now a longtime resident of Kaysville, Utah. For more than half of my life, I spent my professional career as an auditor for the state. 

Today, I am fully retired at 60 years of age. But retiring in 2018 was no easy choice. For many years, I struggled with gastrointestinal issues and was misdiagnosed for about 15 to 20 years of my life. The doctors always told me I had irritable bowel syndrome (IBS), but I knew that was simply not the case. 

Finally, in 2010, an emergency room visit changed my life forever. I ended up in the hospital for a bowel obstruction, where for the first time in my life a doctor decided to perform an abdominal CT scan which led to a correct diagnosis of Crohn’s disease. I was immediately referred to a gastrointestinal specialist (GI) who to this day has been great to me and given me the healthcare that I’ve needed badly. As recommended by this GI specialist, I underwent colon/rectal surgery in October of 2010, where 3 ½ feet of my small intestine and ½ a foot of my colon were removed. Then in 2018, I was diagnosed with diabetes – which has been the more manageable condition thus far. 

Over the span of 13 years since my surgery, I have been put on a range of four biologic drugs meant to treat my Crohn’s disease and help me adjust to my new normal. I spent five years taking Humira, a TNF suppressor medication designed to stop tumor necrosis factor-ɑ or TNF from attacking healthy cells, which had a good effect on me until my body developed antibodies to it. I then spent four years on Entyvio, which never worked quite as well as Humira. Then for about three months I took Renflexis, which failed me immediately. I then fought my insurance to cover the next medicine I was prescribed: Stelara, where the copay per each injection was $2,641.09 every eight weeks.

I felt it was impossible for me to cover this expense. I needed Stelara to control the inflammation in my guts, so this is where my fight for affordable medications started. Stelara was far too expensive for my insurance to cover it until I qualified for its copay assistance program I am on now, where I only pay $10 per injection. But in a few years, I will have to make the move from private insurance with copay assistance to Medicare, where Stelara costs will impact me again. Despite being on Stelara at an affordable price now, my new normal has changed my life dramatically – most of my day is now spent on several runs to the bathroom, many of which are painful, and my wife and I worrying about our financial stability. 

My wife, Sandy, also has medical issues of her own. She is on numerous prescriptions. She is currently on Medicare and does not qualify for co-pay assistance plans like I do. Between Sandy and me, we are currently on five of the medicines that were announced eligible for Medicare to negotiate lower prices for. Sandy is on Entresto, Emgality, and Farxiga. I am on Stelara and Jardiance. Our total out of pocket costs for these five drugs are in the thousands of dollars. 

High cost drugs are truly a challenge we must overturn. By making prescription drugs more affordable for patients, patients like me could feel a sense of relief we have missed for so long. 

More Than Half Of Voters Have An Unfavorable Opinion Of Drug Companies, And Their Lawsuits Only Do More Damage To The Industry’s Image
 
Elected Officials Who Align Themselves With Drug Companies, Against American Voters, Do So “At Their Own Political Risk” 

WASHINGTON, D.C. —  A new national survey released today shows that Americans overwhelmingly – by more than a 5-to-1 margin – oppose the pharmaceutical industry’s lawsuits attempting to block Medicare from directly negotiating lower prescription drug prices. And by almost a 4-to-1 margin, voters reject drug company threats that lower negotiated prices will lead to fewer new treatments and cures.

“The American people understand the lawsuits to block lower drug prices through Medicare negotiation are not about looking after the best interests of patients and consumers, but about the industry seeking to restore its unilateral power to dictate prices of brand name drugs without limits in the United States,” said David Mitchell, a patient with incurable blood cancer whose drugs carry a list price of more than $960,000 per year and founder of Patients For Affordable Drugs Now. “The lawsuits are a naked assault against the will of the American people, and we stand with the people.”

“Efforts in Congress to undermine implementation of the Inflation Reduction Act fly in the face of the wishes of the overwhelming majority of voters – 84 percent of whom support the law, including 93 percent of Democrats, 78 percent of independents and 80 percent of Republicans,” Mitchell continued. “Elected officials who align themselves with this unpopular and greedy industry, against the will of voters, do so at their own political risk.” 

Poll results show that the respondents who viewed drug companies unfavorably jumped from half to two thirds upon hearing of the lawsuits and the arguments from both sides. The poll also found that drug companies’ argument that the Medicare negotiation law will lead to fewer cures is not believable to voters by a nearly 4-to-1 margin, and voters by a 6-to-1 margin say drug companies are opposing this law over profits, not because it violates the constitution. Consistent with previous polls, 84 percent of voters support allowing Medicare to negotiate directly with big drug companies to lower the prices of some drugs.  

“Medicare sets prices for everything else it pays for – Big Pharma has been the only player exempt from a process to arrive at a fair price,” said Merith Basey, executive director of Patients For Affordable Drugs Now. “Pharma makes a huge profit negotiating in every other high income country in the world, and those nations have better health outcomes, longer life expectancy and for lower cost. It’s in the United States that the drug industry seeks to fleece patients with unlimited pricing power.”

The national survey of 1,000 likely voters was conducted August 23-27, 2023, by the bipartisan team of researchers, GS Strategy Group and Hart Research Associates. It has a margin of error of +/- 3.1%.

Read the full poll memo here.

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Click here for downloadable PDF

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Welcome to the Week in Review.

1.  Patients Urge Senators To Curb Patent Abuses📝

• Following last week’s six figure ad campaign launch, P4ADNow is continuing to push the Senate to pass a bipartisan package of bills to curb Big Pharma patent abuses and ensure competition to lower drug prices. As part of continued grassroots advocacy efforts in ten states, Jacquie Persson, a patient advocate from Iowa, shared her experience living with Crohn’s disease and explained how Big Pharma makes enormous profits from her prescribed medication, Stelara, by gaming the patent system. Johnson & Johnson is able to “make an additional $18 million” per day in revenue from Stelara’s prolonged market exclusivity in the United States through the use of patent thickets, Jacquie says in the video. Jacquie is one of many patients who have experienced unjustified high prescription drug prices because of Big Pharma’s patent abuse. As P4ADNow’s David Mitchell points out, the good news is that “there is a real opportunity to advance common sense solutions supported by both Republicans and Democrats in the Senate that will deliver relief to patients through lower drug prices,” reported Inside Health Policy this week. Reforms that address patent and regulatory abuses and allow generic competition to come to market sooner have been long-sought by patient advocates — time to get it done, Senators. — (P4ADNow, P4ADNow, Inside Health Policy)

 2.  Defending Medicare Negotiation 

• While big drug companies are throwing in the kitchen sink to try to stop Medicare negotiation, patients, advocates, and lawmakers are holding their ground in defending the historic law. This week, P4ADNow joined Public Citizen in filing an amicus brief in support of the Department of Health and Human Service (HHS)’s opposition to Merck’s lawsuit against the Medicare negotiation program. The brief explains how Merck’s patent abuses unfairly drive up drug prices for patients and calls out its false claims that the Medicare negotiation law is unconstitutional. Merck’s lawsuit would hurt patients like Steven Hadfield, an advocate who takes Merck’s expensive biologic drug Januvia to manage his type 2 diabetes. On the Senate floor, Majority Leader Chuck Schumer and Senator Amy Klobuchar fiercely defended the Medicare negotiation law. Several Members of Congress followed suit — Rep. Ro Khanna shamed Johnson & Johnson for price gouging its drug Imbruvica; Senator Ron Wyden explained how millions of patients will feel relief from negotiated drugs; Senator Cortez Masto highlighted the savings expected for Nevadans from negotiation; and Senator Peter Welch pushed back on Big Pharma lies about the new law curbing drug innovation. P4AD’s David Mitchell joined Bloomberg’s podcast “On The Merits” to discuss the urgent need for negotiated drug prices, especially for cancer patients facing huge costs like himself. “The drugs I take carry a list price of about $960,000 a year, just one of those drugs … cost me more than $17,000 out-of-pocket annually,” David explained. “I’m a lucky guy, I’m alive, I’m grateful, but the drugs I’m taking are way overpriced.” — (Public Citizen, Fierce Pharma, The Hill, Common Dreams, KTVZ, Office of Senator Cortez Masto, WCAX, Bloomberg Law))

3. The Inflation Reduction Act: A Clear Win For Patients 

• While the historic Medicare negotiation program is making headlines, patients are already saving on drug costs because of the other provisions in the Inflation Reduction Act. Reforms such as: capping the monthly cost of insulin prescriptions to $35, making vaccines free, capping out-of-pocket drug costs to $2,000 in 2025, and penalizing drug companies that raise their prices faster than inflation. The new law is already providing relief to 27,000 Minnesotanswho will benefit from the $35 monthly insulin copay cap. Quinn, a patient advocate living with type 1 diabetes, wrote in an op-ed that the new law not only delivers cost savings to patients on Medicare, but assures peace of mind knowing that access to life saving medications is being expanded. Patients on Medicare have been forced to pay unjustified high prices set by drug companies for years. “In the past year and a half, our prescriptions have skyrocketed from $100 monthly to between $350 and $450, leaving us to make tough financial decisions,” wrote New Yorker patient Dawn in an op-ed. “I am one of the people who will save hundreds of dollars each month thanks to this historic announcement.” — (Minnesota Reformer, Syracuse)

One more thing: A new contract between drug company Regeneron and HHS marks “the first time the Biden administration has directly used its leverage to challenge drugmakers’ list prices.” Rachel Cohrs at STAT has the breakdown.

Have a great weekend! 

The Senate is back in D.C. and patients are bringing the heat to pass reforms! Here’s to lower temperatures and lower drug prices.

Welcome to the Week in Review.

1.  P4ADNow Launches New Ads To Push For Competition First 10 Drugs Eligible For Negotiation Announced

• P4ADNow launched a six-figure ad campaign this week as the Senate returned from August recess. The campaign includes two video ads, running on digital and TV platforms in Washington D.C., which feature patients urgently calling on the Senate to pass a bipartisan package of bills to curb Big Pharma abuse and ensure competition to lower drug prices. In one ad, Jacqueline Garibay, a college student from Austin, Texas, shares her experience living with ankylosing spondylitis — an autoimmune disorder that affects most of her major joints. “The last time we had to buy my medication, I decided to forgo it. We just couldn’t afford $6,000 a month,” says Jacqueline in the TV ad. The second ad features Lisa McRipley, a Richmond, Texas patient who is on Medicare and lives with multiple sclerosis. Lisa explains in the video what it’s like to pay $7,500 a month for her medication: “But without it, my disease will progress irreversibly – I could lose my independence solely because of outrageous drug prices.” The campaign also includes digital ads as well as grassroots advocacy in ten states, thanking twelve senators for fighting to lower drug prices by ensuring passage of a bipartisan package to boost competition. Patient advocates are sending a clear message to the Senate: Lowering drug prices through curbs to anti-competitive practices and timely generic competition is crucial to patients who face some of the highest prices in the world. — (P4AD, Endpoints, Bloomberg Government, The Washington Post, The New York Times, New York Amsterdam News)

 2.  Overwhelming Support For The Inflation Reduction Act

• Drug price advocates and elected officials continued to spread the word about the historic drug price reforms in the Inflation Reduction Act this week. P4AD’s David Mitchell joined a roundtable with Department of Health and Human Services (HHS) Secretary Xavier Becerra on the savings anticipated from Medicare negotiation. David also joined a press event with Senator Peter Welch and Families USA to celebrate the landmark announcement of the first ten drugs eligible for negotiation. P4AD’s Merith Basey explained in an interview that because the drugs eligible for negotiation are some of the most expensive for patients on Medicare, the expected savings will be substantial. “I’m thinking of a patient in Glenville who stopped taking Januvia and Jardiance because of the high cost,” wrote Senator Amy Klobuchar in an op-ed. “A lower price could be game-changing for his health and reduce his expenses.” The widely supported Medicare price negotiation program will rein in Big Pharma abuses that harm patients. While drug companies are crying wolf that revenue and innovation are at risk with Medicare negotiation, we know the truth: Big Pharma will still enjoy huge profit margins while taxpayers are the ones who fund the majority of basic development leading to new drugs. “IRA will stimulate innovation,” David explained. “This will force [drug companies] to bring better drugs, innovative drugs, to market so they can charge higher prices for them.” — (Loudoun Times, WAMC, Yes! Magazine, Cape Charles Mirror, Southern Minnesota, YouGov, Bloomberg, Chicago Tribune, Washington Post, pharmaphorum)

3. Financial Burden Of High Drug Prices

• The high price of drugs forces patients to ration or even forgo their medications, reported Emma Bardin of Medcity News. Non-adherence to medication can not only worsen health complications but also represents a financial burden on the health care system, costing between $100 billion and $290 billion every year, according to a review of studies by Annals of Internal Medicine (AIM). “Financial toxicity, a term used to describe financial problems and stress caused by medical costs, affects anywhere from 15% to 65% of patients,” Dr. Fumiko Chino of Memorial Sloan Kettering told Cure Today. We know that one in four Americans struggle with affording their prescription drugs due to high cost — and we won’t stop fighting to lower drug prices until reforms are extended to all patients. — (Medcity News, Medpage Today, Cure Today)

Have a great weekend! 

My name is Judy Aiken, I am 69 years old, a retired nurse, and am from Portland, Maine. I am also a patient living with psoriatic arthritis and psoriasis for over 40 years. I have taken the drug Enbrel to manage my symptoms since about 2007, along with the drug methotrexate.

Enbrel has a list price of $7,000. Prior to my retirement, I thankfully had private insurance through my employer and luckily took advantage of Amgen’s patient support program and paid $0 a month with only an annual out-of-pocket cost of about $60 for my Enbrel prescription. This was a relaxing time period for me as I could afford the medications I needed to manage my health at no devastating cost to me. 

In 2019 when I retired, I qualified for Medicare and got on a Medicare Advantage plan, where I currently get my Enbrel for $330 a month. But at the beginning of each year, I am forced to pay extremely high amounts of money because I am in the donut hole of Medicare’s coverage plan. This year alone, my first refill was $2200 while my second refill was around $1100 – which totals to over $3,000 of out-of-pocket costs in the first two months! This is outrageous. This type of pricing unfairly takes advantage of those on Medicare, many of whom like me, live on a fixed income. 

Even though I am able to make it work right now, I am very aware of the exorbitant list price of Enbrel. If insurance or financial assistance ever failed to protect me, Enbrel’s $7,000 list price would be out of reach for me. 

The unfortunate reality is that I cannot easily cut Enbrel off of my medical treatment plan, as it has prevented me from having any serious psoriatic arthritis flares for some time now. However, some large sacrifices have been made to deal with the financial stress my family and I face with my medical bills. During some months, there are alot of expenses to take care of and I admit I have skipped some of my doses in the past, just to ration out my medication for a little bit longer. I have to carefully monitor my expenses, rarely treat myself or my husband with any unnecessary indulgences or entertainment, and have simply become more cost conscious as a person. 

But as of today, seeing Enbrel on the list of drugs to be negotiated first allows me to take a deeper breath, have hope, and honestly live a better life. Enbrel’s high price has been a real burden, a constant anxiety. A better deal on this drug is life changing for me and thousands of patients. I can only imagine the stress relief I hope to feel in the near future. Furthermore, lower cost prescription drugs in general would prevent many more Americans from encountering jeopardizing financial situations, which nobody should have to go through.  

Digital Ads And Iowans Call On Senators Ernst And Grassley To Pass Bipartisan Legislation To Curb Big Pharma Abusive Monopolies And Boost Lower Cost Generic Competition

IOWA — Patients For Affordable Drugs Now (P4ADNow) launched new ads in Iowa today as part of its “Push For Competition To Lower Drug Prices.” The campaign includes digital ads and grassroots advocacy, through which Iowans thank Senators Joni Ernst and Chuck Grassley for fighting to lower drug prices by ensuring the passage of a package of bipartisan bills that crack down on the drug industry’s anti-competitive practices and promote generic and biosimilar competition.

“Now that the Senate is back from recess, Senators Ernst and Grassley have a real opportunity to advance common sense solutions that will deliver relief to Iowan patients through lower drug prices,” said David Mitchell, a patient with incurable blood cancer whose drugs carry a list price of more than $900,000 per year and founder of Patients For Affordable Drugs Now. “It’s time to curb drug companies’ abuse – through anti-competitive practices that extend monopolies beyond the time intended under law – and allow our system to work, with timely generic and biosimilar competition in the marketplace to lower prices. We urge Senators Ernst and Grassley to act now.”

Below are examples of digital ads running in Iowa:

The campaign also includes TV video ads running in Washington, D.C. that feature two patients who are forced to struggle with the high prices of their prescription drugs and urgently call on the Senate to pass the bipartisan competition bill package.

In addition to Iowa, P4ADNow’s campaign includes digital ads and grassroots advocacy in nine additional states, thanking the following senators for fighting to lower drug prices by ensuring competition: Lisa Murkowski (AK), Rick Scott (FL), Mike Braun (IN), Bill Cassidy (LA), Susan Collins (ME), Josh Hawley (MO), Kevin Cramer (ND), John Cornyn (TX), Ted Cruz (TX), and Mike Lee (UT).

Over the summer, 35 organizations representing patients, consumers, seniors, churches, students, unions and disease advocacy groups sent a letter to the Senate to pass bipartisan patent and regulatory reforms that curb abuses and allow greater competition to lower drug prices. This campaign builds on this momentum by urging Senators Ernst and Grassley to pass legislation to lower drug prices for patients.

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Patients For Affordable Drugs Now is the only national patient advocacy organization that focuses exclusively on system-changing policies to lower drug prices. P4ADNow is independent, bipartisan and does not accept funding from any organizations that profit from the development or distribution of prescription drugs.

Digital Ads And Missourians Call On Senator Hawley To Pass Bipartisan Legislation To Curb Big Pharma Abusive Monopolies And Boost Lower Cost Generic Competition

MISSOURI — Patients For Affordable Drugs Now (P4ADNow) launched new ads in Missouri today as part of its “Push For Competition To Lower Drug Prices.” The campaign includes digital ads and grassroots advocacy, through which Missourians thank Senator Josh Hawley for fighting to lower drug prices by ensuring the passage of a package of bipartisan bills that crack down on the drug industry’s anti-competitive practices and promote generic and biosimilar competition.

“Now that the Senate is back from recess, Senator Hawley has a real opportunity to advance common sense solutions that will deliver relief to Missourian patients through lower drug prices,” said David Mitchell, a patient with incurable blood cancer whose drugs carry a list price of more than $900,000 per year and founder of Patients For Affordable Drugs Now. “It’s time to curb drug companies’ abuse – through anti-competitive practices that extend monopolies beyond the time intended under law – and allow our system to work, with timely generic and biosimilar competition in the marketplace to lower prices. We urge Senator Hawley to act now.”

Below is an example of a digital ad running in Missouri:

The campaign also includes TV video ads running in Washington, D.C. that feature two patients who are forced to struggle with the high prices of their prescription drugs and urgently call on the Senate to pass the bipartisan competition bill package. 

In addition to Missouri, P4ADNow’s campaign includes digital ads and grassroots advocacy in nine additional states, thanking the following senators for fighting to lower drug prices by ensuring competition: Lisa Murkowski (AK), Rick Scott (FL), Chuck Grassley (IA), Joni Ernst (IA), Mike Braun (IN), Bill Cassidy (LA), Susan Collins (ME), Kevin Cramer (ND), John Cornyn (TX), Ted Cruz (TX), and Mike Lee (UT).

Over the summer, 35 organizations representing patients, consumers, seniors, churches, students, unions and disease advocacy groups sent a letter to the Senate to pass bipartisan patent and regulatory reforms that curb abuses and allow greater competition to lower drug prices. This campaign builds on this momentum by urging Senator Hawley to pass legislation to lower drug prices for patients.

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Patients For Affordable Drugs Now is the only national patient advocacy organization that focuses exclusively on system-changing policies to lower drug prices. P4ADNow is independent, bipartisan and does not accept funding from any organizations that profit from the development or distribution of prescription drugs.