Bipartisan efforts strengthens the Dementia public health infrastructure

Published in RINewsToday on December 2, 2024

In the waning days of the Biden administration, Congress has moved one step closer to assisting states to continue to effectively implement dementia interventions.  Following passage of H. R. 7218 on Sept. 17th, by voice vote on Nov. 21st, the U.S. Senate passed S. 3775, also without objection. At press time, the bipartisan legislation now heads to President Biden’s desk to be signed into law.

Once signed, the new law re-authorizes the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L.115-406) enacted in 2018, empowering public health departments across the country to implement effective dementia interventions in their communities.

In a March 2024 fact sheet, the Alzheimer’s Impact Movement (AIM) calls for Alzheimer’s and other dementias to be considered an urgent public health issue, noting that nearly 7 million seniors across the nation are currently living with Alzheimer’s.

While partisan bickering has reduced the number of bills passed during the 118th Congress, Democratic and Republican lawmakers seek solutions for containing the skyrocketing costs of care, finding a cure for debilitating brain disorders, and supporting caregivers. 

The nation spends more than $360 billion per year, including $231 billion in costs to Medicare and Medicaid. Barring any major breakthroughs to prevent, slow down, or cure Alzheimer’s, the number of Americans with Alzheimer’s is expected to double by 2060, costing the nation more than $1.1 trillion per year, says AIM’s Fact Sheet.

Congress continues funding of Dementia effective interventions

In the Senate, S. 3775 was spearheaded by Sens. Susan Collins (R-ME) Catherine Cortez Masto (D-NV), Tim Kaine (D-VA), and Shelley Moore Capito (R-WV), and cosponsored by Sens. Jack Reed and Sheldon Whitehouse.  It’s companion measure, H.R. 7218, was introduced in the House by Reps. Brett Guthrie (R-KY), Chairman of the Health Subcommittee of the House Energy & Commerce Committee, along with Chris Smith (R-NJ), Paul Tonko (D-NY), and Maxine Waters (D-CA).

With its enactment in 2018, P.L. 115-406 accelerated a multi-pronged public health approach to reduce risk, detect early symptoms, advance care, improve data, and ultimately change the trajectory of this devastating disease.

Headed by the Centers for Disease and Prevention (CDC), the reauthorization would authorize $33 million per year, in line with current appropriations, over the next five years to support:

1.  Alzheimer’s Disease and Related Dementias Public Health Centers of Excellence dedicated to promoting effective Alzheimer’s disease and caregiving interventions, as well as educating the public on Alzheimer’s disease, cognitive decline, and brain health. 

2.  Public Health Cooperative Agreements with the CDC that are awarded to State Health Departments to help them meet local needs in promoting brain health, reducing risk of cognitive decline, improving care for those with Alzheimer’s, and other key public health activities. 

3.  Data Grants to improve the analysis and timely reporting of data on Alzheimer’s, cognitive decline, caregiving, and health disparities at the state and national levels.

Since the original Bold Infrastructure for Alzheimer’s Act passed, the CDC has made 66 awards to 45 state, local and tribal public health departments to help them implement effective dementia interventions such as reducing risk, increasing early detection and diagnosis, and supporting the needs of caregivers.

“Alzheimer’s disease is one of the greatest and most under-recognized public health threats of our time. Nearly seven million Americans—including 29,600 Mainers—are living with the disease, and that number is soaring as our overall population grows older and lives longer,” said Maine Sen. Collins, a founder and Senate co-chair of the Congressional Task Force on Alzheimer’s Disease in a statement announcing the passage of the legislation.  

“The passage of this bipartisan legislation is a tremendous victory for families and communities nationwide. By reauthorizing the BOLD Infrastructure for Alzheimer’s Act, we are reaffirming our commitments to providing the tools needed to fight this devastating disease, and to not let Alzheimer’s be one of the defining diseases of our children’s generation as it has ours,” says Collins.

“Since the original BOLD Infrastructure for Alzheimer’s Act passed, public health departments have been able to improve brain health across the life course in their communities,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM president. “The BOLD Reauthorization Act will help public health departments implement effective strategies that promote brain health, address dementia, and support individuals living with dementia and their caregivers,” said Egge. “We urge the President to support the Alzheimer’s community and swiftly sign this bipartisan bill into law,” he says.

Rhode Island response

“Getting this bill across the finish line is a win for the 25,000 Rhode Islanders living with Alzheimer’s, their adult children who work tirelessly as unpaid family caregivers, and for the health and economic needs of the next generation too.  We must continue the progress we’ve made against Alzheimer’s.  We’ve got to find better treatments for Alzheimer’s and related dementias. The federal government must do its part to reduce risk, detect early symptoms, and advance care while lifting the burden on unpaid caregivers,” said RI Sen. Reed.

Since the original BOLD Infrastructure for Alzheimer’s Act passed in 2018, Reed noted that the Rhode Island Department of Health (RIDOH) has been awarded $3.8 million in BOLD Infrastructure for Alzheimer’s Act grants from the CDC. RIDOH has used the federal BOLD grant funds to help to implement effective Alzheimer’s interventions, including boosting early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations, he says.

Victoria O’Connor, program manager at the RIDOH’s Alzheimer’s Disease and Related Disorders (ADRD), who chairs the state’s Advisory Council on ADRD, agrees with Sen. Reed’s assessment about the positive impact of this federal grant on state-wide public health interventions for those caring for persons with dementia.

“The RIDOH Alzheimer’s Disease and Related Disorders Program leads a statewide Advisory Council, convening critical partners, subject matter experts, and people with lived experience to advise implementation of the BOLD funded workplan as well as oversee the Rhode Island State Plan on Alzheimer’s Disease and Related Disorders 2024-2029. This collaborative approach has led to successful implementation of public health interventions statewide that aim to empower all individuals impacted by dementia to achieve their best quality of life.” says O’Connor.

Other congressional actions to combat Alzheimer’s  

Earlier this year, Sen. Reed helped pass the National Alzheimer’s Project Act (NAPA) Reauthorization Act and the Alzheimer’s Accountability and Investment Act (AAIA).  Sen. Whitehouse was also a cosponsor of the National Alzheimer’s Project Act (NAPA) Reauthorization Act.  Both bills were signed into law by President Biden. 

The NAPA Reauthorization Act (P.L.,118-93) reauthorizes NAPA through 2035, considered a roadmap to coordinate federal efforts in responding to Alzheimer’s and other forms of dementia.  Since NAPA was first passed in 2011, Alzheimer’s research funding has increased seven-fold.  Today, funding for research into Alzheimer’s and other dementias totals over $3.8 billion.

The Alzheimer’s Accountability and Investment Act (P.L. 118-93) would require the Director of the National Institutes of Health (NIH) to submit an annual budget to Congress estimating the funding necessary to fully implement NAPA’s research goals.  This will help ensure Congress can make a well-informed decision to determine necessary Alzheimer’s research funding levels.

We have made tremendous progress in recent years to boost funding for Alzheimer’s research, which holds great promise to end this disease that has had a devastating effect on millions of Americans and their families,” said Sen. Collins, who authored NAPA and AAIA.

“These two bills will maintain our momentum and make sure that we do not take our foot off the pedal just as our investments in basic research are beginning to translate into potential new treatments. We must not let Alzheimer’s to be one of the defining diseases of our children’s generation as it has ours,” she says.

And as a member of the Appropriations subcommittee that oversees funding for the National Institutes of Health (NIH), Sen. Reed helped provide a $275 million increase for Alzheimer’s disease research in the fiscal year 2025 Senate Labor, Health and Human Services, Education, and related Agencies Appropriations bill.  In 2019, NIH awarded Brown University researchers, along with Boston-based Hebrew SeniorLife (HSL), over $53 million in federal research funds  to lead a nationwide effort to improve health care and quality of life for people living with Alzheimer’s disease and related dementias, as well as their caregivers.

Medicare Drug Price Negotiation Program to save billions. Cut costs for 10 drugs, 2026

Published in RINewsToday on August 19, 2024

On Aug. 16, 2022, President Joe Biden signed into law the Inflation Reduction Act of 2022 (IRA), which aimed to reduce the federal budget deficit, invested in domestic energy production while promoting the use of clean energy.  The historic federal law (Public Law 117-169) also lowered the health cost for millions of older Americans by lowering the high cost of prescription drugs by granting Medicare the power to directly negotiate drug prices with drug companies 

 IRA also created the first ever annual cap on out-of-pocket drug costs for Medicare beneficiaries,  capping the cost of each covered insulin at $ 35 per month, and the law also made the Affordable Care Act market plans more affordable.

On Aug. 15, 2024, just one day before IRA’s 2nd Anniversary, Biden and Vice President Kamala Harris unveiled the new lower prices for 10 drugs in which Medicare and drug companies negotiated under the new Medicare Drug Price Negotiation program. As a result, the negotiated prices will save the Medicare program some $6 billion.

Before a crowd of thousands at the Price George’s Community College in Largo, Maryland, Biden and Vice President Kamala Harris who has become the presumptive Democratics nominee for president, made the announcement. 

“We finally beat Big Pharma,” said  Biden.

 Sixty-five million Medicare beneficiaries give Medicare “collecting bargaining power,” noted the Vice President. “And now Medicare can use that power to go toe-to-toe with Big Pharma and negotiate lower drug costs,” said Harris.

And that they did. 

Medicare’s Bargaining Power Puts the Brakes on Rising Drug Costs

 Empowered by the passage of IRA, Medicare was able to negotiate 38-79% discounts on 10 life-saving drugs that treat heart disease, diabetes, cancer, and other serious conditions.  These include popular, brand name drugs such as Eliquis, Jardiance, Farxiga, and Stelara — some of the expensive and commonly prescribed medications in the Medicare program.

 The Centers for Medicare and Medicaid Services (CMS) announced on Aug. 15, 2024, beneficiaries will now save $1.5 billion in out-of-pocket drug costs thanks to newly announced prices negotiated by the Medicare program with Big Pharma. The negotiated prices will save the Medicare program some $6 billion in costs. 

According to CMS, “the selected 10 drugs accounted for $50.5 billion in total Part D gross covered prescription drug costs, or about 20%, of total Part D gross covered prescription drug costs between June 1, 2022 and May 31, 2023, which is the time period used to determine which drugs were eligible for negotiation.”    8 Eight of the 10 drugs selected for this year’s negotiation program raised their prices in 2024 – after all 10 drugs were already priced three to eight times higher in the United States than in other countries, noted the federal agency.

The new prices take effect in January, 2026.  Under the IRA’s provisions, Medicare will select up to 15 more drugs covered under Part D for negotiation by Feb.1, and those prices will take effect in 2027. It will expand 20 drugs starting in 2028, says CMS. 

“It’s no exaggeration to say that this a truly historic moment.  We have been advocating for Medicare to have the power to negotiate drug prices with Big Pharma since 2003, when prescription drug coverage was added to the program,” said Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM).  “Unfortunately, the law literally forbade Medicare from negotiating prices with drug makers. The Inflation Reduction Act finally changed that, he said.

According to Richtman, billions saved are proof that the federal government can, and should, leverage its buying power to save Medicare beneficiaries  money — in this case, giving relief to millions of seniors of not having to pay for high drug costs. “This is momentous news for Medicare beneficiaries and the Medicare program itself,” he says.

“The negotiated prices of these first 10 drugs are a great start. We would like to see even more drugs included more rapidly in the negotiation process so that seniors can reap the maximum cost-savings that this process can provide,” said Richtman.                                                                                    

Responding to the White House’s announcement of new details about Medicare drug price negotiations, in a statement Richard Fiesta, Executive Director of the Alliance for Retired Americans, noted that it took more than two decades of activism on the ground, advocacy by thousands of members and the Biden Administration to push for passage of IRA, giving Medicare the power to negotiate fair prices to patients and taxpayers.

 “The savings are staggering. The new prices are 60% lower on average with two drugs slashed by more than 75% per month,” says Fiesta. “Combined with the $ 2,000 out-of-pocket cap on drug costs that will take effect in January, millions of Americans will not be healthier and more financially secure,” he says.

 Fiesta notes, according to the U.S. Congressional Budget Office, in future years, the prices of additional drugs will be negotiated and Medicare will save about $ 100 billion over 10 years. 

While Biden and Democratic lawmakers see the value of granting Medicare the power to negotiate with Drug Companies to lower high drug costs,  no GOP lawmaker voted to pass Biden’s IRA last year, a proposal that allowed Medicare to negotiate with drug companies to lower the cost of drugs.

Not Everyone is On Board 

The drug price policies of IRA were the topic of a Sept. 20, 2023  hearing of the Oversight and Investigations Subcommittee of. House of Representatives’ Energy & Commerce Committee. The hearing, “At What Cost: Oversight of How the IRA’s Price Setting Scheme Means Fewer Cures for Patients,” GOP lawmakers sitting on the panel and four witnesses warned how the drug price negotiations could hurt or help market conditions for new medicines.

 At the hearing, House Energy and Commerce Committee Chair Cathy McMorris Rogers (R-WA) warned that the “Democrat’s drug pricing control scheme was going to do immense harm to patients by crushing drug innovation.  She charged that “unaccountable bureaucrats -not cutting-edge science- backed with entrepreneurial initiative- dictate the value of new cures.”

At press time, GOP lawmakers have remained silent as to their thoughts about last week’s announcement of Medicare lowering the drug prices for ten of the most expensive drugs in Medicare.  

But not President and CEO Steve Ubl – Pharmaceutical Research and Manufacturers of America (PhRMA) President and CEO Steve Ubl quickly released a statement.

 “The administration is using the IRA’s price-setting scheme to drive political headlines, but patients will be disappointed when they find out what it means for them. There are no assurances patients will see lower out-of-pocket costs because the law did nothing to rein in abuses by insurance companies and PBMs who ultimately decide what medicines are covered and what patients pay at the pharmacy,” he said.

“As a result of the IRA, there are fewer Part D plans to choose from and premiums are going up. Meanwhile, insurers and PBMs are covering fewer medicines and say they intend to impose further coverage restrictions as the price-setting scheme is implemented. More than 3 million beneficiaries taking medicines with government-set prices will pay more in 2026,” adds Ubi.

Reflecting Roger’s opening hearing statement last year, Ubi noted: “The IRA also fundamentally alters the incentives for medicine development. Companies are already changing their research programs as a result of the law, and experts predict this will result in fewer treatments for cancer, mental health, rare diseases and other conditions. Medicine development is a long and complex process, and the negative implications of these changes will not be fully realized for decades to come.

“The ironically named Inflation Reduction Act is a bad deal being forced on American patients: higher costs, more frustrating insurance denials and fewer treatments and cures for our loved ones.” charges Ubi.

Following in PHARMA’s footsteps, drug companies also issued statements opposing the power given to Medicare to negotiate lower drug prices.  Novartis, manufacturer of Entresto, one of the 10 selected medicines participating in the price setting process issued a statement.   It called the negotiations “unconstitutional,” predicting “it would have long-lasting and devastating consequences for patients by limiting access to medicines now and in the future.”

Seniors Support Allowing Medicare to Negotiate Drug Costs 

As Congress began debated the merits of the IRA, a national poll of older Americans tracked wide-support for its provisions to reduce skyrocketing drug costs.

According to KFF Health Tracking Poll, a Oct. 12, 2021 poll, few accepted PHARMA and drug makers dire warnings that  high drug prices are necessary for supporting research into new drugs.  Giving the federal government the buying power to negotiate lower drug prices with drug makers and those enrolled in private plans were “favored by large majorities across the political partisans, even if they hear arguments from both sides,” said the San-Francisco-based  national newsroom that produces in-depth journalism about health issues.

KFF poll findings indicated that  83% of the public favor allowing the federal government to negotiate with drug companies to lower drug prices on behalf of people enrolled in Medicare beneficiaries and private plans. “This includes 91% of Democrats, 85% of independents, and 76% of Republicans, as well as majorities of seniors (84%), who would be most affected by such a provision, the findings indicate.

As older voters go to the polls, one thing is clear.  Lowering the cost of pharmaceuticals is a bipartisan issue.   When the dust settles after the November elections, those taking the reins of Congress must not forget this fact and continue to push for policies that will continue to work of IRA.

For fact sheet on Medicare Drug Price Negotiation Program, go to https://www.cms.gov/files/document/fact-sheet-negotiated-prices-initial-price-applicability-year-2026.pdf

Strengthening the Safety Net for Seniors Living in Poverty

Published in RINewsToday on July 15, 2023

A recently released U.S. Census Bureau report should send a message to Congress and spur the efforts of aging advocates to protect older Americans from financial hardship and poverty.  Some consider the “golden years” to be age 60, or 65, and over.  But it’s not so golden for millions of retirees.

According to a recently released U.S. Census Bureau’s report, “Profile of Older Adults by Poverty Status: 2021,” 8.3% of the nation’s population age 65 and over are living in poverty.    

The Census Report, released on June 25, 2024, uses data from the Survey of Income and Program Participation (SIPP), to draw a profile of the 4.7 million older adults who lived in poverty in 2021. This longitudinal survey provides comprehensive information on the dynamics of income, employment, household composition and government program participation.

Poverty in your later years

Here are a few data nuggets from the latest Census Report’s findings…

According to the report, two-thirds of older adults living in poverty in 2021 were women. Limited time in the workforce, raising children or serving as a caregiver, have decreased Social Security benefits, leading to income insecurity in their later years. Older adults living below the poverty line were more likely than those “non-poor” to have never married, says the report, noting that this limits the chance of these individuals to accumulate financial resources with a spouse or to obtain financial incentives (such as tax benefits) associated with being married.

And yes, living alone can be hazardous to your pocketbook, notes the Census report. In 2021, most older adults in poverty (62.9%) lived alone, compared to only 26.3% of those not in poverty.

In addition, among older adults in poverty who lived with at least one other person, 65.5% lived with a spouse, 29.9% lived with a child and 11.2 percent lived with a grandchild, noted the report’s findings.

A snapshot of poverty in Rhode Island

According to Maureen Maigret, Policy Advisor for the Senior Agenda Coalition of Rhode Island,” the Census Bureau released a “significant and must-read report.”  

“The data shows that almost five million older adults across the nation are living in poverty, and details how gender and social characteristics contribute to poverty status and wealth,” says Maigret. “Two-thirds of the nation’s older adults living in poverty are women, which is like the poverty profile of older adults in Rhode Island, as are the higher rates of poverty for older persons of color.

Maigret noted that a comprehensive 2014 report on RI Older Women she researched for The Women’s Fund of RI documented the high poverty rate of older women in the state – 9.7% for men and 11.3% for women. The Women’s Fund report also found about 20% of older RI adults living in poverty were more likely to be Hispanic or non-Hispanic Black. 

“Unfortunately, things have not improved,” she says, noting that the poverty rate for older Rhode Islanders has increased to 12.3% (US Census ACS 2022 estimates) which is higher than the 10.9% national poverty rate for older adults.

“Providing data on the poverty status of older adults is important for our state policymakers. It is also critical for them to understand the notable gender differences as women outnumber men in the state’s older population (56% vs 44%), have greater healthcare expenses, are more likely to live alone and need long term supports,” states the former Director of the state’s Department of Elderly Affairs (DEA), now referred to as the Office of Healthy Aging.  Older RI women also have lower Social Security benefits than men (about $5,000 less) and 37% less pension benefits, she says.

Maigret notes that most older Rhode Islanders are not wealthy with  many falling into what is termed the “forgotten middle.” A specifically, term used to describe those individuals with income not low-income enough to be on Medicaid but not enough to meet basic needs–estimated at $30,000/year for a single renter in good health (Elder Index). 

Twenty-seven percent of our older households have income below $25,000 (US Census) which is not sufficient to meet basic needs. This is why we must both improve some of the programs that can help them financially and better inform them of available benefits, she says. 

Tackling poverty in the Ocean State

According to Susan Sweet, founder of the Rhode Island Minority Elder Task Force (RIMETF) (riminorityeldertaskforce@gmail.com), a 501 © (3) nonprofit, established in 1992 after a survey found that elders from minority groups were not being serviced by aging network providers, “The survey revealed that Senior Centers, Adult Day Centers, and other state and local programs had almost no staff who were able to communicate with clients who had limited or no English language skills, and paid no attention to cultural differences in different populations,” she noted.

“While there has definitely been some improvement, most older Rhode Islanders of different cultures and/or languages must seek assistance from the few programs that are specifically directed to them,” says Sweet, a former state associate director of DEA, and advocate for seniors facing hardships and low-income difficulties.

“But they are not the majority of those who barely survive because of a lack of funds and support. Coming from all backgrounds, many poor elders are struggling to meet basic needs such as shelter, food, medicine, medical care, utilities and other necessities”, says Sweet.

“Older adult needs appear to be much worse than they were in the early 2000s. Inflation, Covid, lack of adequate housing options, as well as difficulty in accessing existing assistance programs are pushing these individuals to an existence that threatens their health and their life,” warns Sweet.

State programs that exist for the purpose of helping poor, older adults often have long application periods and stringent rules that create very little ability to respond to emergency situations,” according to Sweet.

Sweet says that RIMETF’s most extensive work is in direct assistance to poor elders for basic needs. “We provide mini-grants , generally in the range of $200 – $400, to low-income elders in dire circumstances by paying directly to providers of goods and services such as rental entities, utilities, fuel companies and gift cards for items such as food, clothing, medicine, and household goods. “Our members also assist to get people on payment plans, programs, services, and better situations that may prevent future emergencies and enable longer-term solutions,” she says.

RIMETF has no paid staff and its Board membership consists of a diverse group of health and social work representatives, program administrators, community members, Senior Center and Community Action staff members, housing specialists, and advocates from other aging programs. The older adults who need help are identified by the group’s membership and demographic information and records are kept by the organization.

The nonprofit group is funded by private foundations such as Nursing Placement Foundation, Rhode Island Foundation, Tufts, Harriet Boucher Foundation, Dexter Fund as well as municipalities including the Cities of Providence, East Providence and Pawtucket.

Both Maigret and Sweet call for more to be done by the Rhode Island lawmakers next session to strengthen the safety net for struggling older Rhode Islander’s to protect them from poverty.

“Yes, absolutely more work needs to be done,” says Maigret. ”Data from the national profile and corresponding state data provide strong evidence of the need to continue advocacy to fight for policies to ensure Rhode Islanders enjoy economic security in their older years.” 

“Policies are a necessary part of the work, but oversight and quality control of state and private programs and services is vital to ensure that actual help is available in a timely manner; currently, oversight is lacking,” says Sweet, calling for state programs and policies to be better monitored and evaluated by those who deal with poor older adults and know the hardships suffered by them.  

“The reality of increasing poverty among elders requires a grass roots understanding of the lack of support actually available to meet their needs,” says Sweet.

To get a copy of the Census Bureau’s report,  “Profile of Older Adults by Poverty Status: 2021,” go to https://www2.census.gov/library/publications/2024/demo/p70-193.pdf

To read “Older Women in Rhode Island: A Portrait, Woman’s Fund Rhode Island 2014,” go to https://wfri.org/assets/older-woman-rhode-island.pdf