[Maryland] Parkinson Patient Larry Zarzecki: “I Can’t Afford The Best Drugs On The Market, Even With My Insurance, And I Have Good Insurance.” “[Larry] Zarzecki, a retired state trooper, lives on about $38,000 a year from his pension. The 55-year-old can’t afford the latest Parkinson’s drugs, which would cost him about $3,800 a month out of pocket. Instead he takes a combination of nine less-effective medications that cost him about $800 a month. ‘I can’t afford the best drugs on the market, even with my insurance, and I have good insurance,’ Zarzecki said.” (Josh Hicks, “Maryland Weighs New Approach To Curbing Prescription Drug Costs,” The Washington Post, 2/16/18)

[Massachusetts] Type 1 Diabetic Myranda Pierce: “I Cannot Afford The Insulin That These Companies Make … These Companies Have Priced Their Insulin So High That It Is More Than My Rent.” “Myranda Pierce of Jamaica Plain is in the unenviable position of having to choose between buying the medication she needs to live or paying her bills. ‘I cannot afford the insulin that these companies make,’ she said. ‘These companies have priced their insulin so high that it is more than my rent.’ Pierce, 31, has Type I diabetes and doesn’t have health insurance — ‘Yes, even in the state of Massachusetts,’ she said. ‘We all know MassHealth is amazing, but it does take time to kick in,’ said Pierce, a graduate student at Boston University School of Medicine. ‘I recently, and many times during my life, rationed my insulin.’” (Marilyn Schairer, “Rent Or Insulin? The Rising Cost Of Diabetes Meds Forces Patients Into Difficult Choices,” WGBH, 1/17/19)

[Massachusetts] Mother Of Type 1 Diabetic Tina Sudens: “I’m Having To Choose Between Two Lifesaving Medications, But [My Daughter] Comes First. You Always Choose Your Child Over Yourself. My Biggest Concern Is That The Cost Of Insulin Will Increase More. I Don’t Know What To Do.” “Ms. Sunden, who has asthma, also needs an inhaler that costs about $80 a month, she said, but has gone without it to help pay for insulin.  ‘I can go without it, but she can’t,’ she said.  ‘I’m having to choose between two lifesaving medications, but she comes first.  You always choose your child over yourself.  My biggest concern is that the cost of insulin will increase more.  I don’t know what to do.  If it goes any higher, my husband said he will have to get a part-time job to pay for it.’  She said it scares her to hear about kids with diabetes who have died trying to ration their insulin whose families can’t afford it.” (Paula J. Owen, “Area Families Of Diabetics Fight Soaring Cost Of Insulin,” Telegram, 2/9/19)

[Rhode Island] Jonathan Foltz On Paying For Son’s Anti-Seizure Medication: “It Feels Like We’re Pawns … [The Drugmaker] Is Allowed To Take Advantage Of Us, And We Have To Move On And Go About The Challenge Of Living.” “At 7 months, Trevor was diagnosed with infantile spasms, a rare and catastrophic form of epilepsy. The diagnosis was devastating, forcing the family to cancel an overseas move and fight for their son’s life. It also thrust them into the unregulated world of America’s drug prices. Trevor’s doctors said he needed a ‘miracle drug’ known as Acthar. But between Trevor’s birth and diagnosis, the price of the drug had shot up from $1,600 a vial to more than $23,000 a vial — making him one of the first children caught up in one of medicine’s most controversial price hikes … ‘It feels like we’re pawns,’ says Trevor’s father, Jonathan. The drugmaker, he says, ‘is allowed to take advantage of us, and we have to move on and go about the challenge of living.’ ‘It seems very backwards, from the top down — and we’re at the bottom.’” (Wayne Drash, “Anatomy Of A 97,000% Drug Price Hike: One Family’s Fight To Save Their Son,” CNN, 6/29/18)



[Iowa] Type 1 Diabetic Roxanne Strike: “As An Adult, I Was Unable To Afford My Insulin Costs, Even With Insurance. I Quickly Learned To Ration My Insulin To Spread It Out For As Long As Possible.” “As of this year, I will have had Type 1 diabetes for 30 years. I was diagnosed around 5 years old. I remember my parents’ worry about being able to afford all the insulin costs, testing supplies and doctor visits. They shielded me as much as they could, but I had a sense of their fears. As an adult, I was unable to afford my insulin costs, even with insurance. I quickly learned to ration my insulin to spread it out for as long as possible. I lost massive amounts of weight and often went into diabetic ketoacidosis. But, having lived with high blood sugars for so long, I became quite adept at treating this by myself instead of going to a hospital where I would add more health-care debt.” (Editorial Board, “‘Every Month, I Worry About Being Able To Stretch My Insulin To My Next Paycheck.’” Des Moines Register, 2/6/19)

[Illinois] Jill Webb On Paying For Daughter’s EpiPens: “It’s So Nerve-Wracking To Make Sure You Always Have One With You … It’s Crazy That It’s Something That’s Needed To Save Someone’s Life, And Not Every Person Can Afford $300.” “Jill Webb, a Lakeview mother of four whose eldest daughter Morgan, a Lane Tech High School student, is highly allergic to tree nuts, peanuts and fish, says the high price is a problem. Like many families, Webb buys several EpiPen injectors to keep in her home, purse, child’s backpack and other places. The injectors expire after 12 to 18 months, meaning people have to keep buying new ones. ‘It’s so nerve-wracking to make sure you always have one with you,’ Webb says. ‘It’s crazy that it’s something that’s needed to save someone’s life, and not every person can afford $300.’” (Stephanie Zimmermann, “Despite Promise By FDA Boss Of Lower Cost, New Generic Epipen Isn’t Any Cheaper,” Chicago Sun-Times, 12/1/18)

[Minnesota] Type 1 Diabetic April Stastny: “My Husband And I Have To Put [Insulin] In The Budget … There’s Definitely Things That We Did Not Get To Do, That We Do Not Get To Buy – Not Only For Enjoyment, But Literally Food Sometimes.” “Another challenge is affording her medication. A 15 day supply of insulin costs her family $1,700, and Stastny also has to pay another $80 every two weeks for her blood sugar monitor. ‘My husband and I have to put it in the budget. It goes right next to the daycare, the groceries, the gas the internet, insulin,’ Stastny says. ‘There’s definitely things that we did not get to do, that we do not get to buy – not only for enjoyment, but literally food sometimes. The money has to come from somewhere.’” (Veronica Marshall, “Families Turn To Federal Lawmakers For Help With Insulin Prices,” Valley News Live, 2/8/19)

[Wisconsin] M.S. Patient Abigail Bostwick: “I Didn’t Cry When I Was Handed The Diagnosis Of M.S. … [But After Learning How Much Prescriptions Would Cost,] That Was When I Felt Truly Helpless.” Ms. Bostwick was diagnosed with multiple sclerosis in 2013. Insurance covered the first drug she took, Tecfidera, but required her to contribute $1,000 a month. ‘I didn’t cry when I was handed the diagnosis of M.S.,’ Ms. Bostwick said. But after learning how much prescriptions would cost, ‘That was when I felt truly helpless.’ Ms. Bostwick, a former journalist, has coverage through her husband’s employer because she can no longer work. They hit their $4,500 annual deductible in the very first month of every year because Gilenya, the drug she had been taking until last fall, carried a list price of about $5,500 a month. The couple put aside $375 every month to make sure they could cover that deductible … Ms. Bostwick suffered severe side effects that led her to stop taking Gilenya, and she’s recently been approved to begin a new drug, Ocrevus. ‘This is such a huge bill and it’s not really something that we can forgo,’ she said. ‘We’re your basic middle-class couple. We don’t have an extravagant lifestyle or anything like that. But we always seem to fall through the cracks.’” (Katie Thomas & Charles Ornstein, “The Price They Pay,” The New York Times, 3/5/18)



[Virginia] Psoriatic Arthritis Susie Christoff: “I Can’t Get Down On The Sand To Play With My Kids Without Help. I Can’t Get Up Without Help. I’m Not Ready To Stop Trying. But I’m Also Not Ready To Go Through My Entire Retirement Fund To Walk.” “If Susie Christoff, a 59-year-old who suffers from debilitating psoriatic arthritis, lived in Italy, the cost of her preferred medicine would be less than a quarter of what it is in the U.S., according to data gathered by GlobalData, a research firm. Christoff tried a series of expensive biologics before discovering that a once-a-month injection of Cosentyx, manufactured by Swiss drugmaker Novartis, worked the best … And those drastic price differences are true even though there is no biosimilar version of Cosentyx yet available in Europe, and might not be for years. The cost of the drug is taking a toll on Christoff. This past summer, her progressive disease made it difficult to enjoy the annual family vacation with her three grown children and their kids in Virginia Beach, Va. ‘I can’t get down on the sand to play with my kids without help. I can’t get up without help,’ Christoff recalled. ‘I’m not ready to stop trying. But I’m also not ready to go through my entire retirement fund to walk.’” (Sarah Jane Tribble, “Why The U.S. Remains The World’s Most Expensive Market For ‘Biologic’ Drugs,” Kaiser Health News, 12/20/18) 

[Texas] Cystic Fibrosis Patient Lora Moser: “My Family Alone Has Raised Three-Quarters Of A Million Dollars In Order For These Drugs To Be Developed, And Now Here I Am, The Drug Has Been Priced Out Of My Reach.” “$272,000 a year. That’s how much a drug called Orkambi is listed for, and some researchers say that’s four times its value.  Orkambi is for people with cystic fibrosis, which is a genetic disease that affects your lung functions. It’s one of the first drugs to treat the underlying cause of the genetic disorder, rather than only treating the symptoms. The drug can break down mucus built up in the lungs to prevent infections, helping people live longer. Lora Moser, who lives in Leander, told us she was diagnosed with cystic fibrosis when she was 2 years old. ‘When I was diagnosed in 1979, the average life expectancy was about 14,’ she said. ‘So my family made it their mission to do everything they could to extend my life.’ That included raising money for research and development of drugs like Orkambi. ‘My family has spent endless hours fundraising for these life-saving drugs,’ she said. ‘My family alone has raised three-quarters of a million dollars in order for these drugs to be developed, and now here I am, the drug has been priced out of my reach.’” (Yoojin Cho, “Leander Woman Faced With 5-Figure Co-Pay For Lifesaving Drug,” KXAN NBC, 8/23/18)

[Florida] Linda Lundy: “Even Taking Generic Drugs, I Can Barely Eke By, And If Prices Go Up It Can Mean The Difference Between Continuing That Medication Or Having To Forgo It. I Want To Live, And I Need These Drugs To Do So.” (Linda Lundy, “Friday’s Letters: Stop The Ridiculous Rise In Drug Prices,” Tampa Bay Times, 11/15/18)



[California] MS Patient Victoria Stuessel: “Right Now, We’re Just Scraping By … It’s Horrible.” “When President Trump gives his speech about prescription drug prices Friday, perhaps no one will be listening more intently than Victoria Stuessel.  If the President has successful ideas for cutting drug prices, maybe she can stop skipping doses of her multiple sclerosis medicines.  Perhaps she can send her 3-year-old daughter, Adilyn, to preschool. Right now, she can’t afford it, given the high prices of her MS drugs.  Maybe — just maybe — they could even take a family vacation. ‘Right now, we’re just scraping by,’ said Stuessel, 33. ‘It’s horrible.’ Even with health insurance, copays for her six prescriptions cost $400 a month. That’s a big burden on her family’s income: Because of her MS, a degenerative neurological disease, her cognitive skills declined. She had to quit her job as an optician. Her family now depends solely on her husband’s earnings as a truck driver.” (Elizabeth Cohen, “Patients Who Can’t Afford Medications Pin Hopes On Trump,” CNN, 5/10/18)

[California] Aviva Williams On Treating Children’s Intestinal Infection: “They Price It Because They Can. Wall Street Decided They Could Make Money Off Prescription Drugs, Which Is Just Scary And Depressing.”

Last year, Ms. Williams’s four-year-old daughter, Amy, began complaining about an itchy bottom — a classic sign, her doctor later informed her, of pinworms. Ms. Williams gave Amy an over-the-counter medicine and her daughter’s symptoms seemed to improve. When the pinworms returned a while later, the doctor prescribed albendazole, a prescription treatment that has been around for decades. Ms. Williams thought little of it, until she checked the price with her pharmacist. The drug cost $724 for a four-tablet treatment, and according to her drug plan, she had to pay about $250. Because her doctor recommended that all four family members be treated, she was suddenly facing a $1,000 bill … She said she is furious that she was forced to pay $750 for an old drug. ‘They price it because they can,’ said Ms. Williams said. ‘Wall Street decided they could make money off prescription drugs, which is just scary and depressing.’” (Katie Thomas & Charles Ornstein, “The Price They Pay,” The New York Times, 3/5/18)

[Washington] Type 1 Diabetic Jasmyn Cooper: “Every Month, I Stress Over Being Able To Afford My Supplies. Every Month I Worry About Being Able To Stretch My Insulin To My Next Paycheck. I’ve Recently Debated Starting To Cross The Border To Buy My Insulin In Canada.” (Editorial Board, “‘Every Month, I Worry About Being Able To Stretch My Insulin To My Next Paycheck.’” Des Moines Register, 2/6/19)

[Washington] Diabetic Adam Kozie: “I Was Exasperated, Paying So Much For My Drugs. I Need This To Keep Myself Alive.” “Adam Kozie, his wife, and cats Zelda and Geo live in Seattle. Adam is an insulin-dependent diabetic. His cost of a vial of insulin shot up from 40 to 135 dollars, even though he has insurance. ‘I was exasperated, paying so much for my drugs. I need this to keep myself alive,’ Adam shared.” (Charlotte Ames, “Skyrocketing Insulin Prices,” WTAJ, 12/6/18)

[South Dakota] Cancer Patient Kristen Kilmer: “When You Are Looking At Your Daughter, You Ask Yourself, ‘Do I Take A Medication That Might Allow Me To See Her Graduate High School? Or Do You Stop Taking It To Avoid Causing Her Financial Harm?” “When Kristen Kilmer was diagnosed with incurable breast cancer at age 38, her first thought was of her 8-year-old daughter. Kilmer lost her own mother as a teenager and was determined to get more time with her only child. Kilmer searched for experimental treatments, opting for an unproven approach in which researchers select drugs based on the genes in patients’ tumors … Kilmer’s insurance company calls it experimental. As a consequence, her insurer has covered only a fraction of her care, forcing Kilmer to make an agonizing choice: stop taking a drug that costs nearly $17,000 a month or pay out-of-pocket, burdening her family with tremendous debt. ‘When you are looking at your daughter, you ask yourself, “Do I take a medication that might allow me to see her graduate high school?”’ asked Kilmer, of Spearfish, S.D. ‘Or do you stop taking it to avoid causing her financial harm?’” (Liz Szabo, “Pricey Precision Medicine Often Financially Toxic For Cancer Patients,” Kaiser Health News, 11/1/18)

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