UNANIMOUS: Maine Lawmakers Move Proposals to Lower Drug Prices

AUGUSTA, Maine — After a series of unanimous votes today, Maine senators advanced legislation that would hold drug corporations accountable for exorbitant price hikes and allow for the safe importation of prescription drugs from Canada. A package of bills aimed at lowering drug prices now moves to the House floor.
 
“Today’s vote shows that Mainers are taking charge in the fight to lower drug prices,” said Ben Wakana, Executive Director of Patients For Affordable Drugs Now. “We applaud consumer groups and the state legislature’s efforts to rein in drug prices, and we are proud patients are standing up against abusive pricing practices.”
 
In advance of today’s votes, Patients For Affordable Drugs Now published a series of patient stories to underscore the urgency of the drug pricing crisis in Maine. Additionally, four patients testified at an April hearing, and Mainers were given the tools to contact their legislators in support of the proposed changes.
 
Here’s how the pending legislation would benefit Mainers:

• LD 1162: Would require drug manufacturers to disclose the costs to develop, produce, and market certain drugs, and would build on a law passed last year that requires the Maine Health Data Organization to post the most expensive and commonly prescribed drugs in Maine.
   
• LD 1272: Would create a state-administered program to import wholesale drugs from Canada, which could then be purchased at a significant discount. Under the program, Mainers would save millions on prescription drugs.
   
• LD 1504: Would implement transparency between manufacturers, PBMs, and consumers. It would require that PBMs pass their rebates on to consumers or insurers to lower premiums. Consumers also must be offered the cash price of a drug if it is lower than their copay. 
   
• LD 1499: Would create the Maine Prescription Drug Affordability Board, an independent body with the authority to determine specific prescription drug spending targets based on a 10-year average.
   

Patient Perspective: 
 
Lori Dumont of Brewer: “My brother suffered ketoacidosis because he could not afford his insulin. Like so many others, his insulin costs were out of control. For both his long term and short term insulin he was paying about $1,500 a month. On a fixed income, high drug prices are literally a matter of life and death.”
 
Sabrina Burbeck of Old Town: “When my youngest son was 18 months old he was diagnosed with Type 1 diabetes. In order to survive, he relies on Humalog Insulin. One vial of Humalog costs $350.”
 
Glenda Smith of Kennebunk: “My Symbicort, Lostatin, Spiriva, and other medications cost me more than $1,200/month, not to mention the $5,000 we have to pay out of pocket before insurance even begins to pay its portion. That is not realistic on our fixed income. My drug costs alone are more than my entire Social Security check.”
 
Christina Raymond of Limestone: “In order to manage my disease, I require several medications –– Lupron, Tamoxifen, and Neulasta –– in addition to my regular chemo treatments. Lupron costs me $1,500 per month and my Neulasta runs $6,000 per shot.”

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What do FIFA and Pharma have in common? They’re both corrupt!
 
1. Common Sense in the Commonwealth

• This week, Patients For Affordable Drugs Now launched an ad campaign in support of plans from Massachusetts Gov. Charlie Baker and the state Senate to tackle high drug prices. — (The Boston Globe)

2. Oh, Come On

• Patients For Affordable Drugs Now submitted a letter to the FTC to request an investigation into suspected biologic and PBM antitrust behavior keeping lower-priced biosimilars out of patients’ reach. — (Axios)

3. Big Pharma on the Stand

• The DOJ wants a jury trial for Mallinckrodt, the company at the heart of a 97,000 percent price spike for a gel mainly used to treat infant seizures. — (CNN)

4. David Update

• David Mitchell, our founder, who lives with multiple myeloma, recorded a video message this week with an update on his cancer. — (Twitter)

5.  How Do You Lower Drug Prices?

• GOP senators have asked PhRMA how they should lower drug prices. We have predicted PhRMA’s Magic 8 Ball answer: “Better not tell you now.” — (The Hill)

BOSTON — After drug prices for MassHealth doubled in five years, Governor Charlie Baker and the state legislature are advancing budget proposals that would require drug companies to justify exorbitant prices and allow the state to negotiate drug costs on behalf of patients and taxpayers. In support of this effort, Patients For Affordable Drugs Now, a bipartisan national patient organization, is launching a 6-figure ad campaign to support the budget proposal and give residents tools to contact their legislators in support of these reforms.

“The status quo gives drug companies carte blanche to dip into Massachusetts’ state coffers and patients’ pockets, and it’s time for change,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “Massachusetts residents are suffering under relentless prescription drug price hikes. We support Governor Baker, consumer groups, and the state legislature’s efforts to curtail rising drug prices, and we are excited to give residents the tools they need to take a stand.”

ABOUT THE AD CAMPAIGN

As part of the campaign Patients For Affordable Drugs Now will:

• Launch video ads on YouTube, Facebook, Twitter, and across local digital platforms that tell the story of a Massachusetts resident who couldn’t afford the price of her life-saving drugs.
• Give Commonwealth residents digital tools to contact legislators via letters, Facebook, and Twitter in support of the measures.
• Elevate thevoices of local patients to demonstrate the human toll of high-priced drugs on Commonwealth residents.

PATIENT PERSPECTIVES:
 
Patients For Affordable Drugs Now has shared drug pricing stories in Massachusetts, sending two patients to testify before the Joint Committee on Health Care Financing and publishing a raft of patient stories on its website to underscore the urgency of the drug pricing crisis in Massachusetts.

• Kathleen Rider, Otis, MA: “I am on a fixed income and am forced to shell out $145 for the medication every three months. It adds up. The stress of having such a costly medicine does affect my mental health. This is a necessary medication for me.”
   
• Diane Sarmento, Lowell, MA: “I am a Medicare patient who was prescribed Ampyra, which is meant to strengthen my muscles and improve my overall quality of life. But the price of this drug is prohibitive: when I can’t get assistance, I can’t afford it.”
   
• John Wood, West Springfield, MA: “I have type 2 diabetes that I work to keep at bay by living a healthy lifestyle. However, I also take Onglyza to help maintain my A1C levels. I usually fall into the Medicare donut hole within 6 months, causing a coverage gap. That’s when the price skyrockets to upwards of $450.”

HOW THE BUDGET PROPOSAL WOULD WORK 

Governor Baker and the Massachusetts State Senate agree on key provisions to lower drug prices. Their plan would allow MassHealth to negotiate lower drug prices and:

• Establish and publicly post a target value for the drug;
• Guarantee a public hearing where drug manufacturers discuss and justify their prices;
• Require oversight, reporting, or an accountability process for the drug manufacturer if negotiations fail.

MassBio has tried to water down the budget plan by lobbying to remove any public posting of drug value and weaken enforcement mechanisms. Today’s campaign will push back against the effort by drug corporations to keep prices high. 

POLLING
 
According to recent polling from the Kaiser Family Foundation, only 25 percent of Americans say they trust drug corporations to price their products fairly. Nearly one in fourAmericans report difficulty affording their prescription medications.
 
ABOUT
 
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 and distribution of prescription drugs. 

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KEY POINT: “The Senate would give the state’s Health Policy Commission authority to demand information from drug companies that have failed to reach a negotiated price with the state secretary of health and human services…This provision has teeth — unlike the House version which was redrafted at the behest of MassBio, the chief lobbying group for the industry here.“

The state budget is where the rubber meets the road of governing. And this week the real give and take begins between House and Senate budget negotiators not over mere dollars and cents — $42.8 billion is the bottom line in both versions — but about the policies that each branch has defined as critical in the year ahead.

Behind closed doors six legislators will exercise their powers to craft new laws, impose new taxes, and generally set the parameters for how much progress this state will make in the year ahead in such critical issues as education and health care.

Oh sure, at the end of the process the budget for the year that begins July 1 will go back to the full House and Senate for a final vote. But make no mistake, this is where the big decisions are being made. This is the proverbial sausage factory — a boutique operation, but one with the power to impact millions of lives.

Amid the thousands of budget line items and dozens of so-called outside sections — budget riders on policy issues — some stand out as being as critically important as they are contentious.

Prescription drug policies: Here we would urge the Senate side to stick to its well-crafted effort to rein in the prices of a relative handful of high-end drugs that threaten to drive up the cost of the state’s Medicaid program, which already consumes about 40 percent of the entire state budget.

The Senate would give the state’s Health Policy Commission authority to demand information from drug companies that have failed to reach a negotiated price with the state secretary of health and human services.

“If after review of records or documents the commission determines that a drug manufacturer’s pricing of a drug may be unreasonable or excessive, the commission shall hold a public hearing,” the Senate language says. Manufacturers would be required to appear, testify under oath and would face penalties for knowingly obstructing the commission’s efforts. Ultimately the case could be referred to the attorney general under the state’s consumer protection law. Net savings to the state are estimated at $28 million.

In other words, this provision has teeth — unlike the House version which was redrafted at the behest of MassBio, the chief lobbying group for the industry here.

Massachusetts is already far behind in drug regulatory and disclosure efforts long underway in neighboring Connecticut, Vermont and New York. To do nothing this year is to fall even farther behind.

New excise taxes: Here again the Senate budget tackles two critical issues the House choose to ignore. The Senate would impose a 75 percent excise tax on vaping materials — or as the budget calls them “electronic nicotine delivery systems.” This isn’t simply a revenue raiser, although it would raise an estimated $24 million a year. The real need is to make the product more expensive to an increasingly youthful cohort of vapers attracted by its bargain price and its flavored products (an aspect of the problem not tackled in the Senate budget).

The Senate also included a 15 percent excise tax on the gross receipts from sales of prescription opioids, the revenue from which — estimated at $14 million a year — would go into the state’s Substance Use Disorder Prevention and Treatment Fund.

UMass tuition freeze: Both the House and the Senate have agreed on the bottom line appropriation for the five-campus University of Massachusetts system. The Senate, however, frustrated with the university system’s regular tuition hikes, opted for the blunt instrument of a one-year freeze on undergraduate tuition and fees.

UMass President Marty Meehan argues that will lead to cuts in the short term and cost more in the long run. What might be a logical alternative is a suggestion in a recent Pioneer Institutereport on university spending — an audit of capital and operating budgets by the state comptroller’s office. After all, where’s the harm in that?

The budget dollars of line items are relatively easy to negotiate — splitting the difference has always been a tried and true tool. Policy issues represent a higher degree of difficulty, but in the cases mentioned above are clearly worth the effort — and the fight.

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Quick message to PhRMA: We’re gonna ride til we can’t no more.
 
1. PrEP-ing for a Fight

• The latest wave of HIV activists are challenging drug maker Gilead to make HIV prevention medication affordable for all who need it.  — (NPR) 

2. Cliff’s Notes

• Drug pricing is cloaked in secrecy. This video breaks down the supply chain and the price hikes along each step of the way. — (The Wall Street Journal) 

3. Better Than Mountains and Craft Beer

• Colorado is the first state to place a price cap on out-of-control insulin prices. — (CBS) 

4. Seniors Hurt the Most

• A recent study found that cancer drug prices for seniors are on the rise, nearly doubling in some cases. — (JAMA)

5. Chart Pack!

• The federal government negotiating for the most expensive medications in Medicare Part D? Yes, please. — (P4AD)

We have all the drug pricing news that’s fit to summarize. Welcome to the Week in Review in prescription drug pricing!
 
1. Almost Isn’t Good Enough

• In an effort to reduce the public scrutiny around exorbitant insulin prices, Eli Lilly has began sales of its “half-priced” generic version of Humalog. It’s still not enough. — (CBS News)

2. Too. Much.

• Novartis is charging more than $2 million for a gene therapy it can’t take full credit for.  — (CNN)

 3. Taken Hostage

• Hackers aren’t the only hostage-takers in Baltimore. The self-insured city had filed an antitrust suit against a Johnson&Johnson subsidiary, accusing the drug maker of thwarting generic competition for an expensive cancer drug. — (The Baltimore Sun)

 4. First in the Nation

• Spunky Maryland’s new drug pricing affordability board will be enacted July 1. We expect more reforms to come from states this year. — (AP)

 5. It’s Personal

• P4AD founder David Mitchell spoke with Houston Public Media about the importance of addressing the rising costs of prescription drugs. — (Houston Public Media)

ANNAPOLIS, Md. — In response to news that Maryland’s law to create the nation’s first prescription drug affordability board will go into effect on July 1, 2019, Patients For Affordable Drugs Now Executive Director Ben Wakana issued the following statement:
 
“This is a huge victory for Maryland patients and taxpayers. We are asserting the power of citizens to push back against the abusive monopoly pricing of drug corporations, and this new law is a step toward the day when all taxpayers and patients can use their purchasing power to demand fair prices for the prescription drugs we need.”
 
BACKGROUND

• Gov. Larry Hogan announced today that he would neither veto nor sign the measure, meaning it will become law on July 1. 
• The Maryland legislature created the Prescription Drug Affordability Board on bipartisan votes. The bill would:
  • Create a five-member board to review new brand-name prescription drugs that enter the market at $30,000 or more per year or course of treatment.
  • Review existing brand name medications that increase in price by $3,000 or more per year.
  • Authorize the board, with the approval of the legislative policy committee, to establish maximum costs to be paid by state and local governments for certain high-cost medications.
• Patients For Affordable Drugs Now endorsed the legislation and ran an aggressive campaign to support the bill, including digital ads that gave thousands of state residents the tools to support its passage. The five-figure P4ADNow effort supported state partners, including AARP Maryland, NAACP, MedChi, and the Maryland Health Care For All Coalition.

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SACRAMENTO, Calif. — A groundbreaking bill to lower prescription drug prices will move to the full Assembly floor. Assembly Bill 824 would stop Big Pharma from cutting deals that block less-expensive generic drugs for state residents — a tactic that limits patient choice and costs taxpayers billions each year.

AB 824 would:

• Target a practice called “pay-for-delay,” in which brand drug corporations pay generic drug makers to delay the marketing and release of cheaper generic prescription drugs.
• Make “pay-for-delay” deals illegal and provide the California Department of Justice a path to more easily investigate them.
• Place the burden of proof on drug companies to prove to the California Attorney General’s Office that deals aren’t anticompetitive.

“California residents have been speaking out in support of the state’s effort to stop Big Pharma from cutting anti-competitive deals that keep drug prices high,” said Juliana Keeping, Communications Director for Patients For Affordable Drugs Now. “Thanks to a dirty tactic called ‘pay-for-delay,’ drug corporations are allowed to pay off generic competitors in an effort to maintain their monopoly and increase prices for patients. California patients have had enough and are sending a simple message: Drugs don’t work if people can’t afford them.”
 
Here’s what California patients speaking out about the need to lower drug prices have to say:

Dorothy Nerli, Willows, CA: “I find I am faced with increased costs, like the time my Spiriva went up to $129. Spiriva helps to clear my airways, clearing out my lungs in order to make my breathing easier. I have scar tissue in my lungs due to several bouts of pneumonia. This is a horrible case of greed on the part of the manufacturers, who should lower the price of these medications. It shouldn’t cost seniors their rent or a healthy diet in order to be able to breathe.”

Elizabeth Reinboldi, Vacaville, CA: “If I weren’t able to get my medication, it would be a great detriment to my quality of life. I love to be involved with my church and volunteer as much as possible. I wouldn’t be able to do these things if I couldn’t get my medicine, or if the price goes up at all. I simply wouldn’t be able to walk due to the pain. We need lower drug prices as soon as possible.”
 
Sharon Fisher, Rio Vista, CA: “Because of the high price, my doctor put me on a cheaper drug: Tramadol. It does not work as well as the Lidocaine. I don’t get to do any of the activities that I used to love. I miss going to the gym and leading an active lifestyle, but my pain is simply too severe. Too many seniors have to go without medicine due to high out of pocket costs. Something needs to change –– and soon.”
 
Patients For Affordable Drugs Now is a Washington, DC-based patient advocacy organization that takes no money from the pharmaceutical industry or any other player in health care. As part of its ongoing campaign in support of the California legislation, Patients For Affordable Drugs Now:

• Launched a 5-figure campaign to advance the bill  
• Gave Californians digital tools to write hundreds of letters in support of AB 824

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