Patricia’s Story

I live with high blood pressure as well as insulin-dependent diabetes. I am on Medicare and live off a fixed income. I am very money conscious, because I need to stretch out my budget in order to afford my medications, housing, food, and other necessities. Before I was eligible for Medicare, my insulin would have cost me $1,200 every three months. When I found out, I was stunned. I could not afford that. Fortunately, now that I am on Medicare, I am able to afford the copays for my insulin. However, with prices continuing to rise, I worry that I will be forced — again — to make the tough decision to go on the less safe insulin. Seniors like me should not have to decide between eating and taking their drugs.

I was diagnosed with cystic fibrosis as a newborn and have lived with this chronic illness my entire life. I deal with the financial and personal hardships as best as I can. My husband and I spend about half our monthly income on covering health care costs now, and I’m only going to need more medications as my cystic fibrosis progresses. When I once fell into the coverage gap, I had to pay $1,000 upfront for a necessary inhaled antibiotic, Colistin. $1,000 is an outrageous cost, and I know that if something happens to my coverage, I could suddenly be faced with this cost again.

My son Brody was diagnosed with type 1 diabetes at 5 years old. He’s now 10. One day, I received a phone call saying my son left his Humalog insulin at school. It was almost 5 p.m. and the school was closed. I immediately panicked. Brody needs his insulin, so I called our local pharmacy to try to get the dose we needed to get through the evening. I was shocked to find out that it would cost more than $300 for the emergency dose. I immediately started worrying about how I would pay for it. Would I need to pay on a credit card or get the insulin at an ER? No mother should have to worry about paying for her child’s necessary medication. There should be better options in place for families like mine. Insulin has been around for too long to be priced that high.

I am now retired, but I endured years of painful plaque psoriasis while I was in the workforce. When I was prescribed Humira, I quickly discovered that it was a “miracle drug” in treating my symptoms. It helped me treat the painful sores on my body that had plagued me for years. However, I have been forced to stop taking Humira after learning the treatment would cost me over $8,000 a year out-of-pocket. I don’t have too large of a savings account, and I live off of the fixed income provided to me by Social Security. I can’t afford to pay for Humira under any circumstances.

SAINT PAUL, M.N. – In response to the news that Minnesota Governor Tim Walz signed into law a bipartisan bill that requires drug companies to justify price hikes, Ben Wakana, the executive director of Patients For Affordable Drugs Now, issued the following statement:

“Drug corporations have been raising prices with no reason for years now, and their price gouging must stop. As the country grapples with COVID-19 and its worsening economic repercussions, it is imperative that policymakers and hardworking Minnesotans have a window into the pharmaceutical industry’s drug pricing decisions. We applaud Minnesota lawmakers and Governor Walz for passing legislation that will hold Big Pharma accountable for setting high prices.”

BACKGROUND:

• The Prescription Drug Price Transparency Act (SF 1098) requires drug makers whose products hit certain price increase thresholds to provide advanced notice and justification of the increases to the Commissioner of Health. Manufacturer reporting on the drugs — which includes information on manufacturing costs, marketing, and sales — will be published publicly by the Minnesota Department of Health.
• Patient Action: This spring patients across Minnesota have written to their state legislators urging them to pass legislation that will address the skyrocketing prices of their prescription drugs.
• Minnesota Momentum: The bill’s passage follows the enactment in April of the Alec Smith Emergency Insulin Act, which creates a free 30-day supply of insulin for people with diabetes who can’t afford it. Alec Smith, a restaurant manager from Minneapolis, died at 26 of ketoacidosis after rationing his insulin, and his parents campaigned in the intervening years for drug pricing reform.
• Patients For Affordable Drugs Now is a bipartisan 501(c)(4) national patient organization focused exclusively on policies to lower drug prices. To maintain its independence, the group does not accept donations from organizations that profit from the development or distribution of prescription drugs. In support of The Prescription Drug Price Transparency Act, the organization gave Minnesota patients tools to contact their representatives to encourage passage. 

1. Decades of disinterest

• A pot of government gold – and the prospect for no-strings-attached profits – is fueling pharma’s interest in vaccines and treatments for COVID-19 after *decades* of disinterest in treating infectious disease. Read the second blog in our series on taxpayer funding for COVID-19 vaccine and treatment development. — (P4AD)

2. ? Cries for reform will grow louder ?

• The old way Big Pharma conducts itself isn’t going to fly in our new pandemic paradigm. The public is watching, and if pharma hoards intellectual property and profits at the expense of public health, ensuing cries for reform will be deafening. — (Bloomberg Law)

3. Pandemic price gouging

• A drug maker tripled the price of a pill as it pursued the medication’s use for coronavirus patients – and it’s not an isolated instance. Pharma, we’ve got our ? on you. — (Axios)

4. Follow the money

• The author of “PHARMA: Greed, Lies, and the Poisoning of America,” discusses how drug industry lobbyists successfully blocked proposed measures in the recent $8.3 billion COVID-19 relief package that would have allowed the government to ensure fair prices for COVID-19 drugs. If pharma’s recent, and distant, sordid past has taught us anything, it’s that we can expect more of this. — (The Hill)

5. Without lower drug prices, expect more stories like this

• A Kansas dad of four and aircraft mechanic was laid off just before the coronavirus struck and is about to lose his health insurance. He fears he’ll be forced to choose between feeding his children and buying his insulin. No one should have to make that choice. — (CBS)

I am a multiple sclerosis patient. I can’t smile because I can’t afford Lyrica. Lyrica is a medication that treats nerve pain, and it would help with the stinging in my mouth and the effect the nerve pain has had on my taste buds. The cheapest I could find this medication was $240, but depending on my coverage, it would sometimes be $400. Before my divorce, my husband’s insurance would help me pay for it. It really improved my health and made me feel so much better. But now I only have Medicare, and they just don’t cover Lyrica — so I simply can’t afford it.

As a small business owner with a high-deductible insurance plan, my family has paid as much as $700 per month for the insulin my daughter needs to stay alive. In contrast, I’ve bought exactly the same insulin in six other countries at 10 percent or less of the price. And in most countries, I didn’t even need a prescription! Why do Americans have to pay so much more for exactly the same drugs? I’ve been using my voice to raise attention to this issue to make sure that insulin, and all prescription drugs, are affordable and accessible to all who need them.