Senior Agenda Coalition of RI unveils legislative agenda to packed house of seniors

Published in RINewsToday on April 1, 2024

Last Wednesday, the main ballroom at the Crowne Plaza in Warwick was filled, to capacity. Hundreds came to the Senior Agenda Coalition of RI’s (SACRI)  2024 Legislative Leaders Forum to learn about the advocacy group’s issue priorities. House and Senate leadership, along with members of both caucuses came to listen, learn and to respond to SACRI’s four priority issues for 2024.

We’re back, and we are stronger than ever,” announced Maureen Maigret, SACRI’s Policy Advisor, to 275 attendees who came to this year’s annual legislative forum held on March 27, 2024.  Before she unveiled SACRI’s ambitious legislative priorities she painted a demographic picture of older Rhode Islanders.

The graying of Rhode Island’s population

“We know that 200,000 Rhode Islanders are age 65 and over, and this number is growing,” noted Maigret. According to the former state legislator and Director of the Department of Elderly Affairs, in just six years, 1 in 5 persons will be age 65 and over. Today, 20% of the population in 18 Rhode Island communities are in their mid-sixties and over.

Many seniors still work. They pay taxes, provide care to loved ones, volunteer to contribute to their communities, and religiously vote,” stated Maigret, who noted that they contribute over $3.28 billion to Rhode Island’s economy through Social Security benefits. 

Maigret pointed out that as the older population ages, the percentage of woman increases over men.  At age 65 and over , 56% of this age distribution are woman, 44% are men.  At age 85 and over, the percentage of women rapidly increase to 69% compared to 31% for men. And in nursing homes, 68% of residents are woman while 32% are men. 

According to the U.S. Census Bureau, many older Rhode Islanders have limited incomes. Twenty-seven percent of age 65+ households earn less than $25,000 a year, while 50% earn less than $50,000 a year.

With women leaving their jobs over the years to raise their family, it is no surprise to Maigret that women’s incomes are less than men, this ultimately resulting in a smaller Social Security benefit. The average Social Security benefits of women aged 65 and over ($20,333) is $5,000 less than their male counterparts ($25,204), she says.

Unveiling SACRI’s Legislative Agenda

“Keeping seniors strong” is the theme of this year’s legislative forum, Maigret told the hundreds of seniors and aging advocates in attendance before announcing the SACRI priorities. SACRI is pushing for legislative issues in the areas of:

·       Economic Security

·       Supports at Home

·       Community Connections

·       Housing Options

She called on the House Speaker K. Joseph Shekarchi (D-Dist. 23, Warwick), and Senate Majority Whip, Valarie Lawson (D-Dist. 14, East Providence), in attendance, to support House and Senate legislation, and state budget proposals to address these issues.

SACRI’s top legislative priority is to addressEconomic Security issues. Polls show that healthcare affordability is a major concern, and this impacts many seniors.  Maigret pointed out that Medicare premiums  and co-payment gaps have a major impact on low-income Rhode Islanders who struggle to pay for healthcare, food, rent and basic needs.”

According to Maigret, legislative proposals (S. 2399/H. 7333) would be a legislative fix to reduce high out-of-pocket costs for persons on Medicare. The bills would expand income eligibility for the Medicare Savings Program (MSP), helping an estimated 17,000 low-income seniors and disabled residents pay their $175/month Medicare Part B premium and covering co-pays and deductibles for those with very low-income.

Thousands of low-income seniors and persons with disabilities on Medicare, but not eligible to participate in the state’s Medicaid program, struggle each month to pay their Medicare Part B premiums and co-pay costs for services and prescription drugs causing many to forgo needed health care as they cannot afford to pay the co-payments.

And eligibility to join MSP qualifies those on Medicare to enroll in the federal Extra Help program that provides significant additional financial assistance to pay for

SACRI also calls on the state lawmakers to provide necessary funding in the 2025 Fiscal Year Budget to enhance programs to assist seniors to age in place in their communities. “It’s a very important legislative issue for seniors,” notes Maigret, stressing that most seniors want to stay at home when they need care.   

In large part due to the existing home care staffing shortage, 75% of those referred for state-subsidized home care wait two months or more for these services. A state study recommended home care rate increases to improve access to home health care services which would help to address the worker shortage and provide livable wages for home care workers.  Maigret urged Shekarchi and Lawson to put funding in this year’s budget to implement the study’s recommendations.

Meanwhile, SACRI supports increased funding for local Senior Centers to enable them to continue to provide “community connections” to seniors. “They do amazing work by offering meal programs, technology assistance and training and all kinds of social, health and recreations programs, says Maigret.

Seniors benefit from, and enjoy going to Senior Centers, adds Maigret, reflecting on a comment told to her by a senior attending Warwick’s Pilgrim Senior Center. “It’s my home away from home,” she says.

Governor Dan McKee’s Fiscal Year 2025 Budget would distribute $1.4 million (about $7 per person aged 65 and over in each community) to the local communities for Senior Centers and programs. SACRI calls on the General Assembly to increase this budget allocation by about $660,000 (making the funding tied to $10 per person aged 65 and over. “It’s a small funding request,” says Maigret.

Finally, SACRI urges the General Assembly to continue to address the lack of options and affordability of housing for seniors. Maigret notes that this problem is the result of the state’s growing older population with fixed incomes, combined with low housing production, skyrocketing rent increases, and high property taxes, 

There are many legislative remedies to address the state’s housing crisis, says SACRI, calling on the General Assembly to use a portion of the proposed Housing Bonds to support affordable housing options for older Rhode Islanders. She also suggested that lawmaker’s continue funding the Home Modification Program, expanding the Property Tax Relief Program and finally promoting  accessibility features in new housing developments.

Like previous years, SACRI worked hard to drive home the point of putting a spotlight to its legislative agenda by having “storytellers” translatethe priorities into personal stories.  

House Speaker talks turkey at Legislative Forum

Aging is a very important and personal issue to House Speaker Shekarchi, who is taking care of his 98-year-old father, who remains at home. “That is where he wants to be, he says. “I know that not everyone is fortunate – not everyone has the same support system,” says Shekarchi. “But it’s important that seniors have options so they can choose what’s best for them,” he says

“We need to provide support for seniors to age in place and to remain in their homes, living independently,” states Shekarchi. A great option – which is also the top legislative priority for AARP Rhode Island this year – is creating Accessory Dwelling Units (ADUs). They enable seniors – even young college graduates – to live independently while remaining near family and others, he adds.

“As for seniors who live in assisted living facilities and nursing homes, we need to ensure those facilities are adequately staffed, and that caregivers are paid a sustainable wage,” says Shekarchi. 

“We expect this to be a very challenging budget year, with many worthwhile, but competing, priorities,” says Shekarchi.

“I know the Senior Agenda has legislative priorities in 2024 that I promise we will consider very carefully. And I have a request for all of you. Please stay involved, make your voices heard at the State House,” Shekarchi suggests, “give us feedback. You can testify in person at the State House, or in writing by letter or email.

Valarie LawsonSenate Majority Whip, took the opportunity to discuss the Rhode Island HEALTH Initiative… a Senate legislative package designed to address affordability and accessibility of health care in the state.

According to Lawson, the HEALTH Initiative seeks to ensure the strength of the state’s community hospitals, attract, and retain primary care doctors and makes sure Rhode Islanders can access quality, affordable care. The legislation includes a bill by Sen. Alana DiMario to create a drug affordability commission in Rhode Island … which is a critical step to make the state’s prescription drug system less complicated and less costly. And Sen. V. Susan Sosnowski’s legislation to transform and mandate a continuous Medicaid reimbursement rate review process by the Office of the Health Insurance Commission.

Lawson noted the Senate was working on the SACRI MSP priority legislation and that she is a co-sponsor of the bill. She said that the Senate shares the Senior Agenda’s  priority of making Rhode Island a place where residents can age with comfort and security. “At the State House… we rely on your voices to help guide us,” she said.

Call to Action

Diane Santos, SACRI Board Chair, ended the forum with a Call to Action for attendees to let their voices be heard by contacting their local legislators to express their concerns and to support programs to help keep seniors strong.

SACRI Legislative Leaders Forum organizational partners included: Cranston Enrichment CenterEdward King HouseLeon Mathieu Senior CenterMeals on Wheels RI, Pilgrim Senior Center, Ocean State Center for Independent LivingSt. Martin de Porres CenterThe RI Organizing Project and The Village Common of RI.

To watch the 2024 Senior Agenda Coalition Leaders Forum Conference, go to: https://capitoltvri.cablecast.tv/show/9023

Controversial move by CMS limits coverage for new Alzheimer’s drug, Aduhelm 

Published in RINewsToday on April 25, 2022

Earlier this month, amid the pleas of the Alzheimer’s Association, the National Committee to Protect Social Security and Medicare, and other aging advocacy groups, the Centers for Medicare & Medicaid Services (CMS) made its final decision to limit their Medicare coverage of the controversial Alzheimer’s drug, ADUHELM® , for only those Medicare recipients participating in clinical studies overseen by the National Institutes of Health (NIH) or in other approved clinical trials.

When releasing its decision on April 7, CMS noted from the onset, the federal agency “ran a transparent, evidence-based process that incorporated more than 10,000 stakeholder comments and more than 250 peer-reviewed documents into the determination” to make its decision.

Calls for More Rigorous Studies

According to CMS, over 6 million older Americans are believed to have Alzheimer’s, and this prevalence is expected to rise to 14 million by 2060, barring effective interventions. CMS stated that effective treatments are needed, and because of the early, but promising, evidence and the immense burden of this devastating disease on the Medicare population, the agency is finalizing Medicare coverage, calling for rigorous studies approved by the U.S. Federal Drug Administration (FDA) and NIH to help answer whether this class of drugs improves health outcomes for patients.

“Science, evidence, and stakeholder input led our team of career civil servants and clinicians through this national coverage determination process. There is potential for promise with this treatment; however, there is not currently enough evidence of demonstrating improving health outcomes to say that it is reasonable and necessary for people with Medicare, which is key consideration for CMS when making national coverage determination, said Dr. Lee Fleisher, CMS Chief Medical Officer and Director of the Center for Clinical Standards and Quality, in a statement announcing CMS’s regulatory payment decision.

“In arriving at this final decision, we looked at the unique circumstances around this class of treatments and made a decision that weighed the potential for patient benefit against the significance of serious unknown factors that could lead to harm,” added Fleisher. “If a drug in this class shows evidence of clinical benefit through the traditional FDA approval process, then CMS will provide broad access and ensure the results from the rigorous trials are generalizable for people with Medicare participating in a CMS-approved study, such as a registry,” she said, noting that this decision was made to provide CMS flexibility to respond quickly to providing coverage for any new drugs in this class showing a clinical benefit. 

Biogen, a biotechnology company that manufacturers ADUHELM®m , was quick to give its opinion about CMS’s final decision about coverage of this drug. The Cambridge, Massachusetts based company charged that “this unprecedented decision effectively denies all Medicare beneficiaries access to ADUHELM®m , the first and only FDA approved therapy in a new class of Alzheimer’s drugs. It may also limit coverage for any future approved treatment in the class. These coverage restrictions, including the distinction between accelerated approval and traditional approval, have never been applied to FDA-approved medicines for other disease areas.”

When additional data from this new class of treatments become available, Biogen urged CMS to reconsider its final decision for all FDA-approved amyloid-beta targeting therapies. The company says that it is carefully considering its options and will provide updates as the company further evaluates the business impact of this decision.

Creating Unnecessary Barriers to Care 

Calling the CMS decision wrong, the Chicago-based Alzheimer’s Association expressed deep disappointment, charging that it has essentially ignored the needs of people living with Alzheimer’s disease. “CMS has created unnecessary barriers for individuals with Alzheimer’s disease. Patients with Alzheimer’s, a fatal disease, should have FDA approved treatments covered by Medicare just as those facing other diseases do,” said Harry Johns, Alzheimer’s Association chief executive officer. 

Notably, CMS has said in its decision the only way for patients to access the first approved FDA treatment targeting amyloid in those living with Alzheimer’s is to enroll in a clinical trial. While we note CMS has expanded where those clinical trials may take place, in reality this remains an unnecessary and never before imposed barrier to access an FDA-approved treatment, says Johns.

“People living with MCI, Alzheimer’s disease and other dementia deserve the same access to therapies given to those living with other conditions like cancer, heart disease and HIV/AIDS. They deserve the opportunity to assess if an FDA-approved treatment is right for them,” said Joanne Pike, Dr.P.H., Alzheimer’s Association president. “Drugs that treat people in the early stages of Alzheimer’s could mean more time for individuals to actively participate in daily life, have sustained independence and hold on to memories longer,” she said.

According to the Alzheimer’s Association, CMS has incorporated one of its recommendations into the final rule. “Importantly, CMS has decided to utilize a registry for future treatments granted full FDA approval. The Alzheimer’s Association registry will play an important role in collecting and analyzing real-world data. This registry will monitor and report clinical and safety endpoints for patients treated with FDA-approved AD therapies, including accompanying diagnostics, to track the long-term outcomes associated with these therapies in real-world settings. Similar successful registries in heart disease and cancer have enabled researchers, clinicians, health systems and payers to track the long-term performance of therapies using a large, real-world evidence dataset,” the advocacy group says. 

The Alzheimer’s Association also expressed strong concern about the immediate impact CMS’s decision will have on Alzheimer’s and dementia research and innovation. “The agency’s decision to essentially reject the Accelerated Approval Pathway for monoclonal antibodies targeting amyloid for the treatment of Alzheimer’s disease is broad overreach. Accelerated approval is a pathway created by Congress and utilized by FDA to allow for earlier approval of drugs that treat serious conditions, and that fill an unmet medical need. Alzheimer’s is a deadly disease with no survivors,” stated the advocacy group.

“The decision by CMS is a step backward for families facing Alzheimer’s disease,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “Years of increased research funding has led to more progress and innovation than ever before, but today’s decision may halt this progress as developers question if there is a pathway forward to coverage,” she said.

Calls for Reducing Cost of Medicare Part B Premiums

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare, calls on CMS to “swiftly reduce the hefty 2022 Medicare Part B premium increase ($21.60 per month), now that the agency has made its final decision to limit coverage of the controversial Alzheimer’s drug, ADUHELM®m, to patients in clinical trials.” 

“The spike in Medicare Part B premiums was partly based on the drug’s exorbitant cost (originally priced at $56,000 per year) and the potential expense of wider coverage,” says Richtman, noting that the agency is still “reviewing” Part B premiums, under previous direction from HHS Secretary Xavier Becerra. “Medicare beneficiaries struggling to pay their bills need relief from this year’s premium increase as soon as possible, warns Richtman. .

“The Aduhelm controversy highlights the urgent need for Medicare to be able to negotiate drug prices with Big Pharma. If the price of Aduhelm had been negotiated, it is unlikely that it would have impacted Medicare premiums so dramatically in the first place,”  adds Richtman, 

For a fact sheet on Medicare coverage policy for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease, visit https://www.cms.gov/newsroom/fact-sheets/medicare-coverage-policy-monoclonal-antibodies-directed-against-amyloid-treatment-alzheimers-disease.

To read the final NCD CED decision memorandum, visit https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=305.

Social Security ’21 Cola Increase Anemic

Published in RINewsToday.com on on October 19, 2020

With the Social Security Administration’s (SSA) announcement of next year’s Social Security and Supplemental Security Income’s (SSI) meager cost-of-living adjustment (COLA), over 70 million beneficiaries will only see an increase of 1.3 percent in their monthly checks in 2021.  Last year’s COLA increase was 2.8 percent, the largest in seven years.

According to SSA, the 1.3 percent cost-of-living adjustment (COLA) will begin with benefits payable to more than 64 million Social Security beneficiaries in January 2021. Increased payments to more than 8 million Supplemental Security Income (SSI) beneficiaries start on December 31, 2020. 

SSA ties the annual COLA to the increase in the Consumer Price Index as determined by the Department of Labor’s Bureau of Labor Statistics. 

The maximum amount of earnings subject to the Social Security tax (taxable maximum) will increase to $142,800 from $137,700, says SSA.

The earnings limit for workers who are younger than “full” retirement age will increase to $18,960. (SSA deducts $1 from benefits for each $2 earned over $18,960.)

The earnings limit for people reaching their “full” retirement age in 2021 will increase to $50,520. (SSA deducts $1 from benefits for each $3 earned over $50,520 until the month the worker turns “full” retirement age.)

There is no limit on earnings for workers who are “full” retirement age or older for the entire year. 

Next Year’s COLA Increase Not Enough 

Max Richtman, president and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM) calls the increase as inadequate especially for COVID-Ravaged Seniors and noted that it’s the lowest since 2017.  

“The timing could not be worse. The COVID pandemic has devastated many older Americans both physically and financially.  Seniors living on fixed incomes need a lifeboat; this COLA increase is more like an underinflated inner tube,” says Richtman.

The average Social Security beneficiary will see a paltry $20 month more in benefits in 2021, calculates Richtman. “This COLA is barely enough for one prescription co-pay or half a bag of groceries. Worse yet, seniors could lose almost half of their COLA increase to a rise in the Medicare Part B premium for 2021, the exact amount of which has not yet been announced,” he warns.  

“The current COLA formula – the CPI-W – is woefully inadequate for calculating the true impact of inflation on seniors’ pocketbooks. It especially under-represents the rising costs that retirees pay for expenses like health care, prescription drugs, food, and housing. We support the adoption of the CPI-E (Consumer Price Index for the Elderly), which properly weights the goods and services that seniors spend their money on,” says Richtman. 

Examining the Growth of SSA COLAs 

Social Security checks in 2020 are almost 20 percent lower than they otherwise would be, due to the long-term impact of extremely low annual inflation adjustments, according to a newly released analysis by The Senior Citizens League (TSCL).  The analysis comes as SSA announced that the 2021 COLA will be just 1.3 percent, making it one of the lowest ever paid. 

“People who have been receiving benefits for 12 years or longer have experienced an unprecedented series of extremely low cost-of-living adjustments (COLAs),” says TSCL’s Mary Johnson, a Social Security policy analyst for the Alexandria, Virginia nonpartisan senior advocacy group. “What’s more those inflation adjustments do not account for rapidly rising Medicare Part B premiums that are increasing several times faster than the COLA,” she says, noting that this causing those with the lower Social Security benefits to see little growth in their net Social Security income after deduction of the Part B premium.  

Johnson’s COLA analysis, released on Oct. 13, compared the growth of retiree benefits from 2009-through 2020 to determine how much more income retirees would receive if COLAs had grown by a more typical rate of 3 percent. TSCL’s analysis found that an “average” retiree benefit of $1,075 per month in 2009 has grown to $1,249 in 2020, but, if COLAs had just averaged 3 percent, that benefit would be $247 per month higher today (19.8 percent higher), and those individuals would have received $18,227.40 more in Social Security income over the 2 010 to 2020 period. 

During that period COLAs have averaged just 1.4 percent. In 2010, 2011, and 2016 there was no COLA payable at all and, in 2017, the COLA was 0.03 percent. “But COLAs have never remained so low, for such an extended period of time, in history of Social Security,” says Johnson, who has studied COLAs for more than 25 years.  Over the 20-year period covering 1990 to 2009, COLAs routinely averaged 3 percent annually, and were even higher before that period. 

According to Johnson, the suppressed growth in Social Security benefits not only creates ongoing benefit adequacy issues, but also Medicare budgetary programs when the COLA is not sufficient to cover rising Part B premiums for large number of beneficiaries. When the dollar amount of the annual Medicare Part B premium increase is greater than the dollar amount of an individual’s annual COLA, the Social Security benefits of about 70 percent of Medicare beneficiaries are protected by the hold-harmless provision in the Social Security Act.  The Medicare Part B premium of those individuals is reduced to prevent their net Social Security benefits from being lower than the year before, she says. 

However, Johnson notes that the people who are not covered by hold harmless include higher income beneficiaries, beneficiaries who have not started Social Security yet and who pay for Medicare by check and about 19 percent of beneficiaries whose incomes are so low that their state Medicaid programs pay their Medicare Part B premiums on their behalf. 

Johnson says, “that a provision of a recently enacted government spending bill restricts Part B premium increases in 2021. The bill caps the Part B premium increase for next year at the 2020 amount plus 25 percent of the differences between the 2020 amount and a preliminary amount for 2021.”

Don’t look for the “potential Part B spike” to go away, warns Johnson. “Unless Congress acts to boost Social Security benefits and finds a better way to adjust benefits for growing Medicare costs, this problem will continue occur with greater frequency in the future,” she says.

Fixing SSA’s COLA Problem Once and For All

During the COVID-19 pandemic seniors are relying more on their Social Security check but continue to face cost increases each year beyond the extra income provided by the COLA, says Social Security Subcommittee Chairman John B. Larson (D-Connecticut) in a statement following SSA’s announcement of its tiny 2021 COLA increase. “It’s time to fix that by enacting the Social Security 2100 Act.,” says the Connecticut Congressman calling for passage of his legislative proposal that would strengthen SSA benefits by basing the COLA on what seniors actually spend on items such as medical expenses, food, and housing. Under this new CPI-E index, a beneficiary would experience benefits that are 6 percent higher by the time they reach age 90. 

Meanwhile, Congressman Peter DeFazio (D-Oregon) sponsored and Larson, a co-sponsor, have proposed emergency legislation to increase next year’s COLA up to 3 percent. “Due to the COVID-19 pandemic, seniors are facing additional financial burdens in order to stay safe,” said DeFazio.  “This absolutely anemic COLA won’t even come close to helping them afford even their everyday expenses, let alone those exacerbated by COVID-19. Raising the COLA to 3 percent 2021 will provide seniors with an immediate, crucial lifeline during the ongoing coronavirus crisis,” says the Oregon Congressman. DeFazio’s legislative proposal, the Social Security Expansion Act, would also provide a permanent fix to the COLA formula, like Larson using a CPI-E index to factor in seniors’ actual, everyday expenses.