Health advocacy groups oppose groups against drug price negotiations

Published in RINewsToday on August 21, 2023

As supporters of President Biden’s Inflation Reduction Act (IRA) celebrate the one-year anniversary of the passage of this historic legislation, health advocacy groups gathered last week in Austin, Texas, Washington, D.C., Chicago and New York City to publicly oppose and call on the U.S. Chamber of Commerce, Pharmaceutical Research and Manufacturers of America (PhRMA) along with drugmakers to withdraw their lawsuits to block the IRA’s drug price negotiation provisions.  They instead called for the immediate lowering of the prices of brand-name pharmaceuticals.

At press time, Merck & Co., Bristol Myers Squibb Company, Janssen Pharmaceuticals, Astellas Pharma US, PhaRMA, and the U.S. Chamber of Commerce have filed lawsuits arguing that the price negotiation program is unconstitutional and violates the Constitution’s separation of powers clause by giving the U.S. Department of Health and Human Services (HHS) discretion over a maximum fair price for any given drug selected for negotiation.  These lawsuits charge that the Centers for Medicare & Medicaid Services’ (CMS) price controls would force drug manufacturers to pull back on developing new drugs, jeopardizing medical breakthroughs for individuals with life-threatening and chronic illnesses.

The filed legal suits come weeks before Sept. 1 when CMS is scheduled to publish a list of the first 10 drugs that will be subject to negotiations. By Oct. 1, the drug companies must declare whether they will participate in negotiations or face steep financial penalties for not negotiating. The lower negotiated prices will not take effect until 2026.

Public Citizen, a Washington, DC-based nonprofit consumer advocacy group along with other health care advocacy groups including Patients for Affordable Drugs Now, Protect Our Care, Families USA and Doctors for America and AARP and the AARP Foundation have filed amicus briefs supporting HHS’ position that the motion for a preliminary injunction requested by the Chamber and the other plaintiffs in that case should be denied.

At the Washington, D.C. press conference, Robert Weissmanpresident of Public Citizen delivered a petition signed by 150,000 individuals to the U.S. Chamber of Commerce demanding that all court suits be dropped. 

Public Citizen, Social Security Works, and more than 70 health and consumer organizations also sent letters to the prescription drug corporations, demanding those corporations drop their lawsuits and begin negotiating lower drug prices.  The letter cited how drug corporations routinely charge Medicare beneficiaries in the United States twice or more of what they charge patients in other large, wealthy countries – even in cases where U.S. taxpayers supported the drug’s development.

“It’s a disgrace that the U.S. Chamber of Commerce is fronting for Big Pharma [against the interests of the mom-and-pop businesses it purports to represent,” said Robert Weissman. “Patients, small businesses, large businesses, state and local governments, and the federal government all have a shared interest in curtailing Big Pharma price gouging, as the Inflation Reduction Act’s drug price negotiation provisions will do.”

“The lawsuits filed by the large pharmaceutical corporations to overturn Medicare drug price negotiation authority demonstrates that there is no bottom to big pharma’s greed, charges Max Richtman, President and CEO of the Washington, DC-based National Committee to Preserve Social Security and Medicare. “It isn’t enough that revenue to U.S. drug corporations was over $1 trillion in 2022.  It isn’t enough that big pharma benefits from the $54 billion spent in taxpayer dollars per year on pharmaceutical research. It isn’t enough that the 2017 Trump tax cut bill lowered average tax rates of the big pharmaceutical companies by more than 40 percent. It isn’t enough that pharma’s profit margin is 15 percent to 20 percent while the average profits of the nation’s largest 500 corporations ranged between 4 percent to 9 percent,” he says.   

“Americans have had enough of big pharma’s greed – and while I am sure the price gougers won’t stop putting profits before people – we urge the industry to drop this unconscionable lawsuit against the authority to negotiate prescription drug prices,” he adds.

“Big drug companies and their allies are fighting furiously to stop Medicare from negotiating drug prices so they can keep charging Americans the highest prices in the world. Allowing these distractions to derail implementation of the law would not be in the public’s interest, especially for older adults who have waited far too long for affordable drug prices. Medicare drug price negotiation represents a historic opportunity to access lifesaving drugs for millions of Americans at a time when they need them the most,” said William Alvarado Rivera, Sr. VP for Litigation at AARP Foundation.

“Pharmaceutical corporations have long shown that they care about nothing but profits. So, it is not surprising that they are attempting to use the courts to subvert the will of the people and block Medicare from using its bulk purchasing power to get better prices,” said Alex Lawson, executive director of Social Security Works“The law is incredibly clear, as is the will of the American people: Medicare drug price negotiations are legal and incredibly popular. Everybody wins except the greedy CEOs who see their drug price extortion rackets shut down.”

Protests Call for the Immediate Dropping of Court Suits 

On Aug. 16, 2023, in Washington, D.C., the “Drop Your Suits, Drop Your Prices,” a press conference/rally was held outside the headquarters of the U.S. Chamber of Commerce in Washington, D.C., and in New York City outside of the offices of Jones Day, and outside the Federal Courthouse in Austin where some of the drug makers are launching their legal attacks on Medicare, and at the offices of Astellas in Chicago.

At the Washington, DC press conference, a digital billboard advertising on a parked box truck set the stage for the event. In big bold red and gold letters the message read: “The Chamber of Commerce and Big Pharma are suing to keep your drug prices high.  They must drop their lawsuits and lower drug prices.”

Public Citizen’s Weissman kicked off the noon time press conference, stating, the U.S. Chamber of Commerce claims to represent small businesses but these businesses are bearing the brunt of paying for the high price of drugs.  Because of this, 3 in 10 Americans are rationing their drugs, he says. 

Weissman asked why is the U. S Chamber of commerce opposing the interests of small and large businesses? He charges that the nation’s largest lobbying group for the nation’s businesses is “is shamefully fronting for Big Pharma and companies that have an interest in overturning this law” that requires Big Pharma to negotiate with Medicare on drug prices. “But we are here today to tell Big Pharma were not going to let you get away with it,” he says.

“We’re going to win. We’re going to win the in the courts. We’re going to win on the streets. This price negotiation is going to go forward. It’s the beginning not the end in getting big Pharma price gouging under control, making sure medicines are affordable for everyone who needs in this country,” predicts Weissman.

Like all the speakers, 22-year-old Jacqueline Garibay called on the U.S. Chamber of Commerce, PhaRMA, and the other pharmaceutical companies to immediately drop their lawsuits to lower drug prices.  She was diagnosed with Ankylosing Spondylitis, an autoimmune disorder that primarily affects her spine and has spread to most of her major joints. Without expensive biologic medications, Garibay’s spine could fuse and leave her unable to walk by the time she graduates from George Washington University.  

In the last four years since her diagnosis, doctors have put her on four biologic drugs, each one with a price tag ranging from $5,000 to $13,000 every month, trying to find one that will work for her.  There have been times when Garibay has had to forego refilling her prescriptions because of financial difficulties resulting from having to pay for her rent, groceries, and tuition at the same time. “It’s “absolutely terrifying,” she says, fearing that without taking these medications she will risk losing the ability to walk.  

“The new drug price reforms are projected to save patients like her tens of billions of dollars. “It will help me have a future I can afford, a future where I can pursue all my dreams without being financially undermined for the sake of my health condition,” she says.

Laura Marston, a 41-year-old diagnosed with Type 1 Diabetes over 27 years ago at age 14, has seen the price of her insulin soar from the price of a vial for $ 21 to over $300.  “No vial costs Eli Lilly less than $5 to make,” says the resident of Washington, D.C. 

Marston picked up her insulin prescription from the pharmacy a week ago. The price for a three-month supply of seven vials that will enable her to live was $ 2,267.99. “That’s immoral, that’s inhuman and that’s flat out wrong,” she said.

“My message to Eli Lilly, Novo Nordisk, Sanofi and the Chamber of Commerce is lower your insulin prices, or we will do it for you in the form of federal price caps legislation. The 7 million Americans who rely on insulin to level not-stop raising our voices until we no longer have to choose our money or our lives,” she says.

Arthur Blair, a patient advocate for Spaces in Action, described how a debilitating disease forced him to quick his job. What do you do when you don’t have money, not even enough to pay for high cost of drugs,” he asked. 

“Pharma has proven with this latest action [attempting to block the negotiation of drug prices] that they put unreasonable profits before the people. They don’t mind knowing that people are done because they are unable to obtain prescription drugs that would easily save their life and eliminate easier suffering,” charges Blair.

According to HHS, as of June 2021, about 48 million Medicare beneficiaries are currently enrolled in plans that provide the Medicare Part D drug benefit. Last year, Congress came together begin putting the brakes on spiraling drug costs by passing legislation that allows Medicare to negotiate for lower prices.  

Currently drug prices are higher in the U.S. than other countries because Medicare doesn’t negotiate prices with drug makers like other countries do. Because the practice of negotiating drug prices was banned in 2003 under the law that created the Medicare Part D prescription drug benefit, 77 percent of all Medicare beneficiaries pay more for prescription drugs than these nine countries — Austria, Australia, Belgium, Canada, Germany, Japan, Sweden, Switzerland and the United Kingdom (This was documented by a 2021 study of the Rand Corporation.) 

Although the “Drop Your Suits, Drop Your Prices” press conferences held around the nation drew small crowds, the importance of these gatherings is the message they sent to the nation, that is “It’s time to stop blocking a law that puts money into the pockets of seniors instead of the bank account of drug makers.”

To watch the https://www.youtube.com/watch?v=w_8WHFv7oL4

To read why the U.S. Chamber of Commerce is suing the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services to challenge drug price negotiations, go to https://www.uschamber.com/lawsuits/why-were-suing-hhs-and-cms-to-challenge-illegal-price-controls.

To read an amicus brief submitted by Public Citizen, Patients for Affordable Drugs Now, Protect Our Care, Families U.S.A and Doctors for American, supporting HHS’s position that the motion for a  preliminary injunction requested by the Chamber and the other plaintiffs in that case should be denied, go to https://www.citizen.org/wp-content/uploads/35-1-Proposed-amicus-brief.pdf.

To read AARP and AARP Foundation’s full amicus brief, go to https://www.aarp.org/content/dam/aarp/aarp_foundation/2023/dayton-area-cha mber-of-commerce-v-becerra-brief.pdf.

Alzheimer’s Disease Initiative Program Grant Now Recruiting Rhode Island Participants

Published in RINewsToday on August 15, 2022

Last January, CareLink, a nonprofit network of post-acute and community-based providers, received a grant from the Administration for Community Living, a division of the U.S. Department of Health and Human Services. After the required planning period, and identifying community resources and referral organizations, and training staff, CareLink is now able to recruit program participants. Carelink, an East Providence-based healthcare organization, received funding for a three-year grant that offers innovative therapeutic services and programs. In addition, it connects participants with resources and provides caregiver education.  

CareLink’s services and programs will support older people with ADRD who live in the community alone or with a care partner, individuals with intellectual and developmental disabilities who are at greater risk for developing dementia, and persons living in ethnically and culturally diverse communities with limited access to medical care due to economic, language, or other barriers. 

The $904,133 Alzheimer’s Disease Program Initiative (ADPI) grant enables the nonprofit to better support the 24,000 Rhode Islanders with Alzheimer’s Disease and Related Disorders (ADRD). These services are even more critical as this number is projected to double by 2040. In addition to individuals with ADRDs, the grant targets services for individuals with intellectual and developmental disorders and those living at home alone with a diagnosis of cognitive impairment. 

Grant funds will be used to deliver two nationally recognized, non-pharmacological, evidence-based treatment programs – Cognitive Stimulation Therapy (CST) and Skills2Care®. These programs are provided to individuals living with ADRD, and when appropriate to their caregivers, at no cost. Specially trained CareLink occupational therapists and speech-language pathologists who have experience working with individuals with Dementia and their caregivers provide these interventions.   

Two Nationally Recognized Therapeutic Interventions to be Offered

CST addresses memory, thinking skills, and quality of life thru 14-biweekly sessions of structured 45-minute therapy sessions, featuring different topics.  Each session includes a warm-up activity, a song, and a “reality orientation board” that details the date, time, place, and weather.  Sessions include a variety of activities including the discussion of current news, listening and singing to music, playing word games, and participating in activities such as baking. This program can be provided using both individual and group sessions meant to foster social engagement and community. Both Speech-Language Pathologists and Occupational Therapists provide this beneficial program.

Skills2Care® provides training for the individual and their caregiver on managing challenging behaviors. This program, delivered by a trained Occupational Therapist, during five ninety-minute home visits, includes techniques to reduce challenging behaviors, promote functioning, improve caregiver communication, home environment safety, and tips focused on caregiver self-care, including problem solving and teaching stress management techniques. 

“Our focus is on providing innovative treatment for individuals with dementia and their caregivers,” explains Dr. Chris Gadbois, chief executive officer of CareLink, Inc. “We’re integrating interventions and supports for patients and caregivers within the home environment, building upon the recommendations of the individual’s medical professional and resources within the community.” 

“The strong relationships CareLink has with a wide array of community partners will enable this program to reach Rhode Islanders from different backgrounds across the state. We have been overwhelmed by the enthusiastic support of the community for this effort to improve the lives of patients and their caregivers,” says Gadbois. 

“The Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council congratulates CareLinkRI on securing this competitive funding for these important services,” said Council Chair Nancy Sutton, MS, RD.

“A diagnosis of Alzheimer’s or a related dementia is a devastating diagnosis for an individual, their family, and their loved ones. People need to talk to their healthcare provider about any concerns of memory loss, regardless of their age. We know that an early diagnosis allows patients and caregivers to connect with services and resources right away—before they experience a crisis.”

“Dementia care is complex and requires a full team to assist patients and their families navigate the healthcare system and community resources. This funding helps to support and expand a much-needed program where providers can refer patients and caregivers as soon as they receive a diagnosis.”

Christine Gadbois, representing CareLinkRI, is an active member of the Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council, and has informed the Council on this newly funded initiative. Other Council members include the Rhode Island Department of Health, Office of Healthy Aging, Butler Hospital, and Rhode Island Hospital’s memory clinics, and the Alzheimer’s Association – Rhode Island Chapter, and they are all collaborating with CareLinkRI to ensure easy access.

“Alzheimer’s disease and related dementias take such a toll on our communities, and support services like those provided through CareLink and its partners are essential for thousands of constituents and their families,” states Senator Louis DiPalma (D-District 12). “I’m extremely grateful for this award to CareLink which will make an enormous difference in the lives of Rhode Islanders in the years to come.” 

While CareLink is the grant recipient and manager, they have partnered with numerous local agencies, including The Cove Center, Avatar, Trudeau Center, Accesspoint RI, and Meals on Wheels. CareLink is also reaching out to local medical providers, including specialty clinics such as RI Mood and Memory. “We know it is critical to engage community partners to successfully reach a diverse group of individuals who will benefit from these services across the state,” says Robyn Earley, Chief Growth Officer of CareLink. 

“We know these programs are impactful and we are working to integrate these services into the larger landscape of resources for persons with dementia and related disorders, adds Earley. 

Looking for Participants

On May 26, 2022, Earley reports that CareLink began its recruitment efforts for study participants in the community through general outreach. “We are now working on outreach to Rhode Island medical providers, senior centers, intellectual and developmental disability service organizations, senior housing, and other community agencies that serve individuals with cognitive impairments. We are targeting individuals at home through outreach/partnership with MOW, Hope Health, etc.” she says, noting that a plan is in place to outreach to Resident Services Coordinators at senior high-rises to reach the live-alone population.

“The investment in these therapeutic tools has a significant impact on the quality of life and independence of those with dementia,” she says. These interventions enable individuals with cognitive impairments such as ADRD to live longer and more successfully in the community. 

Ultimately, CareLink intends to provide services to over 300 people by the end of grant, three years from now.  

“We have already learned so much from the first month of service and I anticipate continued growth and learning throughout,” says Earley.

For details about this study or for referrals, please contact CareLink at ADPLdementia@carelink.org.  Or call 401 490-7610, Ext. 116.  

To learn more about CareLink, go to www.carelinkri.org/

Herb Weiss, LRI’12, a Pawtucket writer covering aging, health care and medical issues. To purchase his books, Taking Charge: Collected Stories on Aging Boldly, and a sequel, go to herbweiss.com.

RI Senate Tackles High Cost of Prescription Drugs – Herb Weiss

Published in RINewsToday.com on March 15, 2021

In the shadow of the COVID-19 pandemic, as Governor Dan McKee and the Rhode Island General Assembly move to hammer out their Fiscal Year 2022 budget, Senate lawmakers push a package of eight legislative proposals to put the brakes on skyrocketing cost of prescription drugs.

The Senate resolution (2021-S 0560) sponsored by Senate Majority Whip Maryellen Goodwin (D-District 1, Providence), has already been passed and complements the prescription drug affordability package that will be considered next week that would require health insurers to provide coverage, without cost sharing, for colorectal screenings and follow-up colonoscopies when necessary.

The package of legislation aims to protect Rhode Islanders by limiting copays for insulin, capping out-of-pocket expenses for high deductible plans, requiring health insurers to cover preventive colorectal cancer screening, eliminating clauses hidden in pharmacy contracts that prevent a pharmacist from talking about more affordable options, requiring transparent pricing information, importing wholesale prescription drugs from Canada, and creating a board responsible for evaluating and ensuring drug prices are affordable. 

According to Greg Paré, the state Senate director of communications, this package of legislative proposals was developed in conjunction with AARP during the off session before the 2020 Senate session and first submitted last year, but legislation considered last session was limited due to the pandemic and so it did not pass. The legislation has been resubmitted this year with some small modifications and remains a Senate priority.

Last year, AARP along with 14 groups including, the Alzheimer’s Association, the American Cancer Society Action Network, and Aging in Community, urged lawmakers to pass the package of legislative proposals.  Expect to see some of these groups again call for passage of either the total package or specific bills at a Senate Health and Human Services Committee’s virtual hearing, chaired by Sen. Joshua Miller, on Thursday, at 5:00 p.m. For the hearing’s agenda, go to: For hearing details go to: https://bit.ly/3ezofmJ.

Passage of this legislative package would require action by both the Senate and House. At press time, not all of the Senate bills have companion measures in the House.   

Controlling the Skyrocketing Increase of Prescription Drugs

Here are specifics about the Senate’s prescription drug affordability legislative package that will be considered next week by the Rhode Island’s Senate Health and Human Services Committee:  

Legislation (2021-S-0170 sponsored by Sen. Melissa A. Murray (D–Dist. 24, Woonsocket, North Smithfield), would limit the copay for prescription insulin to $50 for a 30-day supply for health plans that provide coverage for insulin. Additionally, the bill mandates that coverage for prescription insulin would not be subject to a deductible.  

Legislation (2021-S 0381)sponsored by Senate Majority Leader Michael J. McCaffrey (D–Dist. 29, Warwick), would cap out-of-pocket expenses for prescription drugs at the federal minimum dollar amount for high-deductible health plans, currently $1,400 for individual plans and $2,800 for family plans.    

The bill (2021-S-0383), sponsored by Senator Goodwin (D–Dist. 1, Providence), would save lives by requiring health insurers cover preventive colorectal cancer screening in accordance with American Cancer Society (ACA) guidelines. This coverage must be provided without cost-sharing and includes an initial screening and follow-up colonoscopy if screening results are abnormal. The ACA recommends people at average risk of colorectal cancer start regular screening at age 45.  

A bill (2021-S -497) sponsored by Sen. Walter S. Felag Jr. (D–Dist. 10, Warren, Bristol, Tiverton) would allow consumers to pay less for their prescription drugs by banning gag clauses sometimes found in pharmacy contracts that prevent a pharmacist from talking to a customer about more affordable options.   

This bill (2021-S-0494) would require pharmaceutical drug manufacturers, pharmacy benefit managers, health insurers, and hospitals to disclose certain drug pricing information. Such transparency would help payers determine whether high prescription costs are justified. This bill is sponsored by Senate President Dominick J. Ruggerio (D – Dist. 4, North Providence, Providence).  

This bill (2021-S-0499), sponsored by Sen. Louis P. DiPalma (D–Dist. 12, Middletown, Little Compton, Newport, Tiverton), would create a state-administered program to import wholesale prescription drugs from Canada, which has drug safety regulations similar to those of the United States. Such programs are allowed under federal rules, with approval from the U.S. Department of Health and Human Services. 

This legislation (2021-S0498) would create a prescription drug affordability board tasked with investigating and comprehensively evaluating drug prices for Rhode Islanders and possible ways to reduce them to make them more affordable. The bill is sponsored by Sen. Cynthia A. Coyne (D–Dist. 32, Barrington, Bristol, East Providence). 

The bill (2021-S 0496) introduced by Sen. Felag (D-District 12, Bristol, Tiverton, Warren) aims to protect consumers from unexpected changes in their health plan’s formularies (list of covered drugs). Under the legislation, formulary changes can only be made at the time of health plan renewal, if the formulary change is made uniformly across all identical or substantially identical health plans, and if written notice is provided 60 days or more before the change. 

Seniors Hit Hard by High Price of Prescriptions

“The high price of prescriptions is having a severe impact on Rhode Islanders, particularly older residents,” said Ruggerio, noting the state’s population is one of the oldest in the nation.  “Many older Rhode Islanders have limited means, and the high cost of prescriptions means people are 

Ruggerio warns that the pharmaceutical industry is not going to address this on its own, so it’s up to the state and federal governments to take action.”

Maureen Maigret, Co-Chair, Long Term Care Coordinating Council, observes that with Medicare paying the tab for costly pharmaceuticals, controlling rising drug costs is a federal issue.  “But this is a big issue to address for those with low and moderate incomes under-insured for prescription drugs,” she says. “I applaud the Senate legislative package aimed at controlling the cost of prescription drugs for Rhode Islanders, says Maigret, who cites the findings of a Kaiser Family Foundation survey that shows one out of four persons take four or more prescription drugs and more than one-third say that have difficulty taking their medication properly due to cost.  “Seniors may fail to get prescriptions filled, resort to pill splitting or skipping doses. Some may end up with costly hospital Emergency Rooms or inpatient visits as health conditions worsen due to the inability to afford their medications, notes Maigret, calling for lawmakers to make necessary prescription drugs affordable for all who need them. Maigret says, “It is time to make necessary prescription drugs available for all who need them.”

“AARP Rhode Island is eager to work with both the Senate and the House of Representatives to pass this important legislation designed to lower prescription drug costs,” said AARP State Director Kathleen Connell. “The high cost of drugs leads families – and particularly older Rhode Islanders on fixed and limited incomes — to often make impossible decisions. No one should have to choose between paying rent, providing food for themselves or their family and vital prescription medications that keep them healthy,” she says.

We look forward to working with legislators from across the state to help improve the health and financial stability of everyone by lowering the cost of prescription drugs. We thank Senate President Ruggerio for once again bringing forth this very important legislation,” adds Connell.

It’s mid-March. Lawmakers turn their attention now to passing the state budget.  Even if the Senate passes every bill in the prescription drug affordability package, the lower chamber must pass companion measures for these bills.  When passed, Governor Dan McKee must sign the legislation to become law.  Right now, it’s an uphill battle and Rhode Islanders must call on their state lawmakers to get on board to support bills to reduce the high cost of pharmaceuticals.  It’s the right thing to do. 

Things that You Should Know 

This meeting will be streamed live online through Capitol TV:

http://www.rilegislature.gov/CapTV/Pages/default.aspx

Written testimony is encouraged and can be submitted prior to 2:00 PM on Thursday, March 18, 2021, in order for it to be provided to the members of the committee at the hearing and to be included in the meeting records. Finally, if you are interested in providing verbal testimony to the committee at this hearing, please go to the following link and make your request by 4:00 p.m., on Wednesday, March 17, 2021:  https://bit.ly/3bIJAs2