PATIENT SPEAKS: Minnesota Patient Testifies in Saint Paul in Favor of Key Bill to Lower Drug Prices

SAINT PAUL, MN — A Minnesotan hurt by skyrocketing drug prices will share his story at the state house today as he testifies before the House Judiciary Finance and Civil Law Division Committee in support of HF 3228, a bill that would allow the state to investigate and address excessive drug costs.

Travis Paulson lives with type 1 diabetes and will explain to the committee how the rising price of insulin forced him to ration his medication, severely impacting his health. Paulson knows he is not alone and is testifying to encourage the legislature to take action on behalf of all Minnesota patients suffering under the crushing cost of insulin and other prescription drugs.

“By the time I was 30… my insulin cost $300 a vial; for me, that was $1,500 a month to survive… My health is what ultimately paid the price… years of rationing insulin has caused long-term complications that never would have occurred if I had access to affordable insulin,” Paulson will testify. “…We cannot allow Big Pharma to get away with pricing drugs out of reach for our families. I strongly urge everyone in this room to support HF 3228.”

To help patients across Minnesota, Paulson will ask lawmakers to support HF 3228, the Prescription Drug Affordability Act. The bill would:

• Establish a Prescription Drug Affordability Commission and Advisory Council.
  • The Commission is designed to protect consumers and the state from excessive drug costs that create affordability challenges.
  • Manufacturers must report certain high-priced drugs and excessive annual price increases to the Commission.
  • The Commission will review reporting, and if they determine that a drug creates an affordability challenge, they can establish a maximum payment for the drug.
• Issue an annual report to the governor and legislature on drug pricing trends.

Paulson will testify at 9:45 AM CT today before the House Judiciary Finance and Civil Law Division Committee.

WASHINGTON, DC — A new campaign by Patients For Affordable Drugs Now calls on Senators to support one of President Trump’s top priorities by passing legislation to lower prescription drug prices. The multi-million dollar campaign, launched today, urges Senators to stand with patients and the President in support of the Prescription Drug Pricing Reduction Act (S. 2543) — a bill that would stop drug company price gouging and lower costs for seniors.
 
“Americans of every political stripe agree that drug prices have got to come down,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “Patients are done with Big Pharma’s lies and outsized influence in Congress, and they’re ready to vote on the issue come November.”
 
The campaign is launching with two national TV ads featuring patients hurt by rising drug prices. Watch the videos, “Gail,” and “Jackie,” and read the transcripts below.
 
As part of the campaign set to run until late May, Patients For Affordable Drugs Now will also release radio and digital advertisements nationally and in key states that demonstrate the toll high prescription drug prices are taking on everyday Americans. In addition, the campaign will commission polling, fly patients to Washington, and offer patients a suite of tools to help them contact their elected officials and demand action to lower drug prices.
 
Starting today, P4ADNow will thank Sen. Joni Ernst (R-IA), the most recent Senator to endorse the Grassley-Wyden bill.

TV AD TRANSCRIPTS

“Jackie”
 
This is a four week supply of my chemotherapy —
It’s 20 pills, and it’s $20,000 every single month.
You know it’s hard enough thinking that I’m not going to live that long and to leave my husband alone.
But to leave him bankrupt? It’s devastating to me.
Millions of people like me are struggling — and drug prices just keep going up and up.
But now there are bipartisan proposals in Congress that would actually bring those prices down.
Mr. President, Congress, it’s time to make history.
The time is now.

“Gail”

My insulin used to cost $26 a vial.
Today, drug companies charge up to $350 a vial.
This is the same insulin formula I’ve been using for almost 30 years.
Regular middle class people like me — we need help.
Without Congressional intervention, many of us are struggling.
Many are dying.
Just because we can’t afford insulin.
Mr. President and Congress, we are counting on you. 

BACKGROUND

• Senate Finance Committee Chairman Chuck Grassley (R-IA) and Ranking Member Ron Wyden (D-OR) introduced the bipartisan Prescription Drug Pricing Reduction Act in July 2019.
• The bill would penalize drug companies for price hikes above inflation and cap out-of-pocket costs for seniors on Medicare at $3,100 per year.
• President Trump and bipartisan lawmakers support the bill, which passed the Senate Finance Committee in July.
• The bill could be included in a health extenders package with a deadline of May 22, 2020.

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FORT WORTH, TX — Texas patients will join Senator John Cornyn at his roundtable today to share their stories about the high cost of their prescription drugs and to support the Senator in continuing to push for passage of his bipartisan Affordable Prescriptions for Patients Act. The legislation was introduced by Senator Cornyn and Senator Richard Blumenthal (D-CT) and aims to curb tactics drug companies use to game the patent system and block generic competition.

Below view the event details, hear from patients who will attend, and read more about the bill.

DETAILS

When: 1:20 PM, Tuesday, February 18, 2020
Where: Northside Community Health Center, Second Floor
              2332 Beverly Hills Drive
             Fort Worth, TX 76114

PATIENT PERSPECTIVE

Emily Grant, Dallas, cystic fibrosis: “I once had to pay $1,000 up front 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.”
 
Savanna Braun, The Woodlands, asthma, psoriatic arthritis, and other chronic conditions: “I will have to make major life decisions because of the cost of my drugs. These decisions range from which jobs I seek to whether or not I can afford certain medications or new therapies.”

Randall and Emma Barker, Wichita Falls, father and daughter with type 1 diabetes: “Both my daughter, Emma, and I live with type 1 diabetes. We have had to make real sacrifices to be able to afford the insulin we need to live.”

BACKGROUND

• The Affordable Prescriptions for Patients Act would:
  • Allow the Federal Trade Commission (FTC) to bring lawsuits against companies that engage in patent abuses.
  • Permit the FTC to investigate whether patent thickets on drugs were created with the intent of delaying generic competition.
  • Create an easier and more efficient court-case process for generic drugs seeking to enter the market.
• TYPES OF PATENT ABUSE:
  • Product hopping is when a brand drug company makes minor changes to its drug to earn a new patent and gain a new period of exclusivity. Product hops are most common when a brand drug is about to face competition from a generic competitor. The brand company will often transfer patients onto the new version of the drug for which they can charge unchallenged prices.
  • Brand drug companies also take advantage of the patent system by adding many trivial patents to their drugs, creating a “patent thicket” and allowing it to maintain longer periods of exclusivity and monopoly power.
  • Brand companies also force generic drug companies into a “patent dance” in which the brand company claims a generic company has infringed on its patents — which can add up to over 100 in some cases — forcing lengthy litigation periods that keep generic competition from coming to market.
• PATIENT IMPACT:
  • One of the drugs Savanna Braun takes, Eliquis, has had generic competition blocked for 34 years.
  • Between 2005 and 2015, more than 75% of drugs to receive new patents were existing drugs already on the market. Of the roughly 100 best-selling drugs, nearly 80% of drugmakers obtained an additional patent to extend products’ monopoly periods, meaning patients are facing crushing drug prices, longer.
  • Humira is the world’s top-selling drug; its drug maker, AbbVie, has blocked generic competition for 39 years while increasing the blockbuster’s price by 144% between 2012 and 2018. Patients who need the anti-inflammatory drug can no longer afford it and their chronic conditions go untreated or worsen.

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WASHINGTON, DC — Patients For Affordable Drugs Now launched a new advertising campaign today thanking Senator Martha McSally for supporting the Prescription Drug Pricing Reduction Act, a bill that would stop drug company price gouging and lower costs for seniors. Drug pricing is top-of-mind for 2020 voters — nearly nine in 10 want Congress to prioritize lowering the prices of medications, polling shows.

Today’s campaign encourages Arizona patients to reach out to McSally’s office directly and thank her for standing with constituents — not Big Pharma.

“Senator McSally listened to her constituents who are calling out for relief from Big Pharma’s unrestrained price hikes,” said Ben Wakana, Executive Director of Patients For Affordable Drugs Now. “We want her to know how much patients appreciate her support and work to advance bipartisan reform that would help fix our broken system.”

Relief from high drug prices can’t arrive soon enough for patients like Luz Lopez who travelled from Arizona to Washington, DC to share her story with Senator McSally and advocate for reforms that would lower drug prices.
 
“I don’t know from one year to the next if I’ll be able to afford the prescriptions I need to treat multiple chronic conditions, including depression and anxiety,” Lopez said. “It is so meaningful to me that Senator McSally listened and stood up for me. I hope more members of Congress follow her lead.”

BACKGROUND

• Senate Finance Committee Chairman Chuck Grassley (R-IA) and Ranking Member Ron Wyden (D-OR) introduced the bipartisan Prescription Drug Pricing Reduction Act in July 2019.
• The bill would penalize drug companies for price hikes above inflation and cap out-of-pocket costs for seniors on Medicare at $3,100 per year.
• With her endorsement, McSally joined President Trump and bipartisan lawmakers in supporting the bill, which passed the Senate Finance Committee in July.
• The bill currently awaits a vote from the full Senate.

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SALEM, OR — Oregon Patient Advocates will meet with state lawmakers today to demand action to address the high price of prescription drugs. Nearly one in three Americans report not taking their drugs as prescribed due to cost. A bipartisan bill in Oregon that would have helped patients was blocked at the 11th hour from receiving a committee hearing. The bill,HB 4147, would have established a program to allow the state to import safe, affordable drugs from across the border in Canada.
 
Patients from across the state travelled to Salem to urge elected officials to stand up to Big Pharma and support the bill. Patients plan to ask their legislators to fight for lower drug prices, especially after this bill was pulled from consideration with less than a month left in the state’s legislative session.
 
Kara Campuzano of Salem, whose son was diagnosed with type 1 diabetes at 5 years old, is all too familiar with high drug prices. “One day, I received a phone call saying my son left his Humalog insulin at school. It was almost 5 PM and the school was closed,” she said. “I immediately panicked. Brody needs his insulin, and 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 me to go to pick up.”
 
Oregon’s HB 4147 would have created a state program to import wholesale prescription drugs from Canada. At significant savings to patients, the proposed program would ensure safety on par with the U.S. drug supply chain system. According to polling, 70% of likely voters in Oregon support importation of prescriptions from Canada.
 
States like Vermont, Colorado, Florida, and Maine have recognized the cost savings of importation from Canada and passed laws that empower them to import and distribute prescription drugs.
 
Read more about the Patient Advocates visiting lawmakers today:
 
Ann Neilson, Madras: I have been prescribed Restasis for chronic dry eye syndrome for some time now, but I haven’t taken it as prescribed due to the horrendous cost — $2,700 per year out of pocket. I have ordered Restasis from Canada in the past because it was much less than it was in the US. 
 
Terry Sissel, Lincoln City: Spending over $3,000 a year on prescription medications was a huge financial burden and that burden remains heavy in my mind. I had to cut the number of trips I took to visit my daughter and her family, and I have no wiggle room in my budget.
 
Pat Rubino, St. Helens: I was fortunate to get approved for a grant for a heart operation, but there was a catch. It did not cover the prescription drugs I needed after my surgery. The sticker shock was unreal. I considered taking a lien on my home.
 
Patients For Affordable Drugs Now is a bipartisan patient advocacy organization that works to elevate the stories of those suffering from the high cost of prescription drugs. P4ADNow does not accept money from anyone that benefits from the manufacture or distribution of prescription drugs.
 
Over 500 Oregonians have shared their stories with P4ADNow about the sacrifices they make in order to afford their prescription drugs. They skip doses, choose between buying their medications and their groceries, and sometimes even go without.

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WASHINGTON, D.C. — In response to President Trump’s statements tonight on drug prices, David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now, issued the following statement:
 
“The President sent a clear signal to Senate leadership that it’s time to pass Chairman Grassley’s bill to stop drug company price gouging. Contrary to the President’s claim, drug prices are not coming down, they continue to go up. The House of Representatives has done its job in passing H.R. 3. It’s time for the Senate to pass legislation that will bring Americans relief from skyrocketing drug prices.”
 
BACKGROUND: 
 
Drug prices keep rising.

• GoodRx: “So far in 2020: 628 drugs have increased by an average of 6.1%.”
• CNN: “Drug makers hiked prices on hundreds of medications for 2020.”
• Axios: “It may be a new year, but the same drugs are once again subject to the same industry practices.”

 
Americans keep paying more.

• Fiscal Times: “U.S. drug prices were nearly four times higher than average prices compared to similar countries.”
• Axios: Americans will be forced to pay 80 percent more for Humira than those in Europe through 2023.
• The New York Times: “A government study said Medicare was paying 80 percent more than other advanced industrial countries for some of the most costly physician-administered medicines.”

 
Patients keep hurting.

• Kaiser Family Foundation: Nearly one in four Americans report difficulty affording their prescription drugs.
• Insulin rationing deaths reported in 2018 and 2019 include Americans with diabetes who were 21, 24, 27, and 28 years old.
• Children and families are forced to fundraise, enter lotteries, and campaign in the media for the medication.

 
People want change.

• A Kaiser Family Foundation January 2020 poll found that drug pricing is the top health care priority for all Americans — Democrats, Republicans, and Independents in the 2020 election year.
  • 87% of Americans “say it is at least very important that Congress work on lowering prescription drug costs.”
  • More Americans think it is very important for Congress to address high drug costs than it is to protect pre-existing health conditions, address surprise billing, do more to combat the heroin and opioid epidemic, or address vaping and e-cigarette use among teenagers.
• 88% of Americans — majorities of Democrats, Republicans, and Independents — support allowing Medicare to negotiate for lower prescription drug prices.

WASHINGTON, D.C. — Juliana Keeping, a patient advocate and communications director for Patients For Affordable Drugs Now, will testify before the House Ways and Means Subcommittee on Health today at the hearing, “More Cures for More Patients: Overcoming Pharmaceutical Barriers.”
 
Juliana is the mom to 7-year-old Eli, who has a life-threatening genetic illness called cystic fibrosis. She will share with the subcommittee her family’s experiences with pharma-funded patient assistance programs, including being unable to afford a drug her son needed to stay healthy when funding from a program was not available.
 
“The undercurrent in all of this is that families like mine are fighting every day not just to keep our children healthy but to keep them alive. Big Pharma has manipulated my family, placing us in an unfair situation when it comes to paying for our drugs with patient assistance programs,” Keeping tells the subcommittee in her written remarks.
 
“We are dependent on these programs to ensure my son gets the medication he needs to stay healthy and alive. We live each day at their mercy as drug companies get richer off of their games to keep prices high and patients in limbo.”
 
The hearing will be held at 2:00 PM at 1100 Longworth House Office Building. Watch the hearing here and read Juliana’s prepared remarks here.

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WASHINGTON, DC — In response to the Trump Administration’s announcement of a proposed rule that would allow the importation of certain prescription drugs, David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now, issued the following statement:

“We are glad the administration has cracked the door open to safe importation of drugs from Canada and other countries. But it’s not a solution that will lower drug prices for the overwhelming majority of Americans. 

“We hope the administration will work with Congress to pass a comprehensive drug pricing reform package and finalize its international pricing index model, actions that would begin to address the fact that Americans pay two to three times more than citizens in other nations for the same drugs.”

BACKGROUND

• According to Canada’s acting ambassador to the United States, Canada represents 2 percent of global pharmaceutical consumption compared with the United States’ 44 percent. This raises questions about Canada’s ability to meet the demands of supplying drugs to the U.S. market.
• The administration’s notice of proposed rulemaking outlines two pathways for importation. The first pathway will guide importation efforts by states like Florida and Maine that passed importation laws during 2019 legislative sessions. The second pathway allows manufacturers to import foreign-made drugs under new drug codes — essentially releasing them from contractual obligations with pharmacy benefit managers (PBMs). Since manufacturers perpetually blame PBM contracts for high list prices, this second pathway provides pharma with an opportunity to put their money where their mouth is.
• Patients will not be allowed to import expensive biologic drugs such as insulin and Humira under the first pathway.

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