My name is Jacquie and I am a full-time graphic designer and marketing manager currently living in Waterloo, Iowa. In 2011, I was diagnosed with Crohn’s disease. The stress of the cost of my treatment has impacted my life in ways that I could never imagine. I am on multiple medications to treat my disease, including Stelara, which begins with an IV infusion that can cost up to $11,000 without insurance. From there, I have to self-administer a shot every four weeks. These shots are $22,800 per dose before insurance.
My name is Travis Paulson and I am from Eveleth, Minnesota.
I have been a Type 1 diabetic for many years, but affording insulin wasn’t that difficult as a child –– it was about $8 a vial. The problems came when I was in my late twenties and early thirties. I was working in finance full-time and going to college full time, and my insurance had a deductible of $7,500. Insulin at the time ranged from $300 to $350 a vial, and I required about five vials a month.
There were times I couldn’t scrape together $5 and was just plain poor due to these costs. On several occasions I starved myself and took less insulin than I was supposed to so my vial would last longer. Unfortunately, even doing that, I would run out of insulin. I wasn’t involved in diabetes groups and knew no other diabetics. I don’t even think there was a name for rationing insulin at the time. I thought I was in a unique situation, so I didn’t reach out for help.
All those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin.
Travis Paulson, MN
I would stay in bed and call into work sick until my paycheck cleared the bank. I’d then force myself up and get to a pharmacy and get insulin. It’s really hard to move when your blood sugar is that high. I remember feeling like I wasn’t going to make it, but somehow I did. Ten years ago, I had never heard of anybody dying from rationing insulin, so I figured that while it wasn’t a good thing, it wouldn’t go so far as to kill me. I’ve learned since then that I was just very lucky at the time –– I easily could have died.
It was during the financial crisis of 2007 to 2008 that I was forced to ration insulin again. Times were tough for lots of people. I remember camps of ex-financial services workers living in tents. But aside from just finding housing during the financial crisis, I had an additional problem: I had to afford my insulin. I traveled around the country working odd jobs to afford insulin and rationed what I had, living a meager existence and working warehouse jobs wherever I could.
It was after I came back home to Minnesota to get back on my feet that I decided I would no longer tolerate the abuse and hold on my life Big Pharma had. I realized I could get insulin from Canada for less than a tenth of the price I was paying in the U.S. From then on, I have been getting my insulin in Canada and helping others to do the same.
The unfortunate thing is that all those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin. My health is what paid the price.
I was diagnosed with type 1 diabetes in 2013, when I was 16 years old. In 2017, my family went on a new insurance plan and my insulin copay suddenly skyrocketed to $550. At that time, I was 19 and paying my own college tuition. It was amazing, really, that my insulin would cost me more than my tuition that year. I started rationing expired insulin, which landed me in the ER in September 2017.
Hey there all you cool cats and kittens, hope you are staying healthy at home! Welcome to the Week in Review in prescription drug pricing.
1. COVID-19: Follow the Money
Patients For Affordable Drugs dug into the massive taxpayer contributions toward COVID-19 vaccines and treatments. The findings? The real heroes of COVID-19 aren’t corner office executives, but the doctors and nurses, grocery store workers, and U.S. taxpayers whose tax dollars will drive the discovery of life-saving vaccines and treatments. — (Patients For Affordable Drugs)
2. Victory in Minnesota
Drug pricing and Insulin-for-All advocates in Minnesota are celebrating a win after the Alec Smith Insulin Affordability Act was officially signed into law. The hard-won reform provides relief to those in urgent need and struggling to afford their insulin. — (Star Tribune)
3. Taxpayers Deserve a Say
A new NIH-led public-private partnership to accelerate COVID-19 treatments and vaccines is a welcome development — but it fails to address future pricing of those drugs. Since taxpayers are investing extraordinary amounts toward the development of COVID-19 drugs, they deserve a say when the time comes to set a price. — (NIH)
4. Members of Congress Call For Drug Pricing Action
As the pandemic’s economic fallout continues to devastate Americans financially and COVID-19 treatments and vaccines are under development, members of Congress are calling for action to address skyrocketing drug costs and ensure that COVID-19 drugs are affordable for all Americans. — (Here & Here)
5. States Taking Charge
States around the country continued to lead the way by passing sweeping drug price reforms ranging from insulin copay caps to PBM crackdowns, all within the last month. Even during a crisis, states are getting the job done. — (STAT)
With promising news on the horizon, we cannot stress this enough – stay home and save lives!
1. Taxpayers deserve a good deal
In the race to find COVID-19 vaccines and treatments, taxpayers are investing in research to get the job done. Drug corporations shouldn’t be allowed to set prices on products taxpayers helped to research and develop — they must partner with the US government to set fair and affordable prices for everyone. — (Inside Health Policy)
2. Patients make it happen ?
After patients penned a letter calling on insulin manufacturers to lower the price of insulin during the COVID-19 crisis, Eli Lilly announced they would offer a program that allows people with diabetes to purchase their insulin products for $35 a month. It’s a win for patients, but we still need action to *lower list prices for ALL.* — (CNBC)
3. Drug Pricing Reform NOW
From Maine to Nebraska, Americans are calling on Congress to take action and lower the cost of prescription drugs by passing the Prescription Drug Pricing Reform Act. — (Bangor Daily News) and (Lincoln Journal Star)
1. #DemandLowerListPrices
As COVID-19 severely threatens the diabetes community’s health and finances, more than 60 people with diabetes and Patients For Affordable Drugs penned an open letter demanding lower list prices on insulin. — (P4AD)
2. Preparation + Opportunity
The global pandemic has put a lot of Congressional goals on the backburner this spring. But with millions of Americans facing pay cuts and layoffs, it’s more urgent than ever to address exorbitant drug prices, and Congress still has a great opportunity to act come fall. — (STAT)
3. Put a Cap On It
Following the lead of several other states, Washington approved a bill that would limit out-of-pocket costs for insulin to $100 for a 30-day supply. While the Big 3 insulin manufacturers should drop the price for all people with diabetes, this is a start. — (The Seattle Times)
WASHINGTON, DC — Overwhelmingly and across party lines, voters want the Senate to do more to lower the prices of prescription drugs and support passage of the bipartisan Prescription Drug Pricing Reduction Act. Respondents resoundingly reject Big Pharma arguments that the legislation would result in worse care or that penalties for price increases above inflation are too high.
The survey of 1,000 likely voters was conducted by the research firm GS Strategy Group for Patients For Affordable Drugs Now. It found Democratic, Republican, and independent voters are all much more likely to vote for a candidate who supports the Prescription Drug Pricing Reduction Act. More than 4 out of 5 likely voters support the legislation, including 55% who strongly support the bill, and nearly three-fourths of respondents said they would be more likely to vote for a candidate who supports its passage.
The Prescription Drug Pricing Reduction Act would rein in price gouging by penalizing corporations that raise their prices faster than inflation and cap out-of-pocket costs for prescription drugs for people on Medicare.
Click here to read more results. Highlights of the survey include:
83% of voters support the Prescription Drug Pricing Reduction Act: 87% of Democrats support the bill and Republicans support it by an 84%-to-7% margin.
GOP voters want the Senate to lower drug prices: More than 85% of voters nationwide, including 81% of Republicans, want the United States Senate to take more action to lower the cost of prescription drugs.
Voters reject pharma’s arguments in opposition to the bill. Under the bill, drug companies would have to pay a penalty if they raise prices faster than inflation.
83% of voters reject Big Pharma’s claim that inflation penalties are too harsh.
8 in 10 voters reject pharma’s scare tactics that penalizing drug corporations for hiking prices beyond the rate of inflation will impact patient care. In fact, 82% of voters believe the bill will have no impact or result in better care.
Nearly three-fourths of all voters said they would be more likely to support a candidate for Senate if they supported the bill, indicating prescription drug pricing will be an issue voters pay attention to when they cast their ballots.
“Republican, Democratic, and independent voters across the country are demanding that Congress act to lower drug prices and overwhelmingly support the bipartisan Prescription Drug Pricing Reduction Act,” said David Mitchell, a cancer patient and Medicare beneficiary, and the founder of Patients For Affordable Drugs Now. “Voters reject Big Pharma propaganda and Americans want their Senators to side with them to lower prices and reduce out-of-pocket costs. They’ll vote on the issue come November.”
GS Strategy Group conducted the research March 7-11, 2020 among 1,000 likely voters nationwide. The margin of error is +/- 3.1% at the 95% confidence level.
Patients For Affordable Drugs Now is an independent, bipartisan patient organization focused on policies to lower drug prices. P4ADNow does not accept funding from any organizations that profit from the development or distribution of prescription drugs.
1. “Drugs don’t work if people can’t afford them”
P4AD founder and cancer patient, David Mitchell, writes about how the growing crisis around COVID-19 brings into stark view America’s broken drug pricing system. — (Patients For Affordable Drugs)
2. Taxpayers left to foot the bill
Facing a wave of public criticism and accusations of profiteering, drug maker Gilead backpedalled its request for orphan drug designation for a potential coronavirus drug that would have blocked competition, allowed tax breaks, and boosted their profits. — (The New York Times)
3. Prices Slashed
Rising Pharmaceuticals, makers of the touted potential coronavirus drug, chloroquine, rolled back a price hike from the beginning of the year. It goes to show price gouging happens all the time, and must be curbed all the time, pandemic or no pandemic. — (STAT)
4. Drug prices continue to soar
A new study revealed that brand drug prices have increased three times faster than the rate of inflation even when you factor in discounts they give to insurers. More than ever, we need drug pricing reform. — (WESA)
5. Buying policies to put profits over patients
Kaiser Health News dug into FEC filings and found that Senators working to advance pro-Pharma proposals were the recipients of hefty campaign donations from pharmaceutical manufacturer-associated PACs. — (Kaiser Health News)
