Tag Archives for Sen. Jack Reed

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.

Rhode Island’s 5-year plan to support persons with Alzheimer’s, related disorders

Published in RINewsToday on February 19, 2024

Last week, state and federal leaders, and the Alzheimer’s Association of Rhode Island, gathered at the East Providence-based PACE Rhode Island to announce the release of  the latest Rhode Island Alzheimer’s Disease and Related Disorders (ADRD) 2024-2029 State Plan. This 25-page strategic plan, details 36 recommendations to improve the quality of life and accessibility of care for Rhode Islanders with ADRD by the end of this decade.

The 5-year plan provides Rhode Island a “Rhode map” to channel its resources to provide care for a growing number of persons with ADRD. In 2020, an estimated 24,000 adults in Rhode Island ages 65 and older were living with ADRD (being cared for by over 36,000 unpaid caregivers). This makes Rhode Island the state with the third highest percentage of Alzheimer’s disease in New England. And this number is expected to increase by nearly 13% over the next few years, with state officials calling it a growing public health crisis.

The State Plan was developed by the RI Advisory Council on Alzheimer’s Disease and Related Disorders and statewide partners consisting of researchers, advocates, clinicians, and caregivers. This public process resulted in identifying dozens of strategies to empower all individuals impacted by dementia to achieve their best quality of life.  (Editor’s note: Weiss serves on the Rhode Island ADRD Advisory Council).

To ensure that the State Plan was community-led and inclusive, the Rhode Island Department of Health (RIDOH) hosted an in-person strategic planning session at PACE-Rhode Island in July of 2023 with nearly 50 attendees representing community-based organizations, people with lived experience, health system partners, academia, and social service agencies.

The released State Plan also calls for the creation of accessible neighborhoods with walkable sidewalks, greater access to healthy food options, and safer public spaces for people living with dementia.  It highlights the importance of convening a workgroup focused on elevating and addressing issues of health equity in dementia care.  It even recommends working closely with Rhode Island cities and towns that have a high prevalence of ADRD to develop action plans that promote age and dementia friendly resources and information that identify local supports for people with dementia and their caregivers.  

From the Plan: Goals for the next 26 years in staffing call for adding 15 more gerontologists and 2,069 aides by 2050 – or on average: .58 gerontologists and 80 aides per year. (Editor’s Note)

The announcement and launch

Lt. Gov. Sabina Matos and RIDOH, joined by Gov. Dan McKee, Sen. Jack Reed, Office of Healthy Aging Director Maria Cimini, and the Alzheimer’s Association of RI, along with Kate Michaud of Congressmen Gabe Amo’s Office, gathered on Feb. 15 at PACE Rhode Island, to launch the release of Rhode Island’s road map to coordinate resources to combat the growing incidence of ADRD cropping up throughout Rhode Island communities.

“This State Plan brings together every part of our government to support Rhode Islanders whose lives are affected by ADRD,” said Lt Gov. Sabina Matos, kicking off the 30-minute press conference. “Under this plan, we’re connecting federal, state, and local government resources to build strong communities where people with dementia can thrive. I’m grateful to be able to serve alongside the community leaders and experts on our state’s Advisory Council on ADRD in coordinating these efforts and carrying on the work started by Gov. McKee,” she said.

“The Plan is our state’s promise that you will never face these things alone – because Team Rhode Island is behind you,” pledged Matos.

“Rhode Islanders and their loved ones affected by Alzheimer’s or related disorders are at the heart of this new state plan,” said Gov. McKee, who as Lt. Governor finalized and distributed the previous five-year ADRD STATE Plan in 2019. 

“Giving them the necessary resources and information to enhance their health and well-being is critical,” said the Governor, stressing that a cure is possible. “We all can play a role, and one of the most important roles people can get involved in is through clinical trials,” he says.

Gov. McKee recognized the efforts of Matos, the ADRD Advisory Council, and the researchers, advocates, and caregivers across our state for crafting, he said, “a very comprehensive plan that promotes inclusion and support.”

Under McKee’s previous five-year plan and its update, the state has accomplished the main goals of dedicating a full-time employee (funded with federal dollars) to coordinate ADRD strategy and promoting ADRD research opportunities in Rhode Island, and including brain health in the state’s other chronic disease management activities. 

Sen. Jack Reed, who serves on the largest and most powerful committee in the Senate responsible for crafting bills that fund the federal government and its operations, left Capitol Hill to travel back to the Ocean State for the press conference, to assure the attendees that he will continue pushing Congress to invest in finding a cure for ADRD. 

Last year, Reed noted that Congress increased the NIH budget to $47.5 billion, and set aside $3.7 billion specifically for Alzheimer’s disease reach. “I’m working hard to raise that total by at least $100 million this year,” he said.

Reed stressed that it is “critical for state officials to continue to focus on effective ways to improve the quality of life for those impacted by dementia and deliver caregiver support.”  But, when it comes to brain health studies, Rhode Island-based researchers are on the “leading edge of the fight against Alzheimer’s.” 

Sandra Powell, Deputy Director at the Rhode Island Department of Health called launching of the State Plan a “big deal” stressing this work is so critical.

According to Powell, the State Plan takes a comprehensive approach focusing on lifestyle modifications, supporting healthcare professional engagement to increase early detection and diagnosis, building a workforce to deliver person-centered dementia care, and using data to drive decision-making and to tackle health disparities. 

Since receiving funding in 2020 from the Centers for Disease Control and Prevention, “we’ve done a lot to connect with partners and advocates to leverage resources for persons with dementia,” says Powell.

“Although most Rhode Islanders and Americans likely know somebody who is living with Alzheimer’s, if people think it’s not their concern, consider these facts. 1 in 3 senior citizens will die as a result of Alzheimer’s or a related dementia. Alzheimer’s disease costs the government more than $350 billion per year for care and more, and by 2050, this disease is expected to cost the government alone 1 trillion dollars,” said Donna McGowan, Executive Director of the Alzheimer’s Association of RI. “So, think again if you believe it’s none of your business. This killer is all of our business!” she says.

“With the great progress and improvement, the plan has seen, our focus remains on creating the infrastructure and accountability necessary to build ADRD-capable programs and services,” says McGowan. With the U.S. Food and Drug Administration approving drugs, like Leqembi, that are proven to effectively slow down the progression of the devastating disease for those living with early onset Alzheimer’s, she calls on Medicare to cover most of the costs. “At the moment, the $26,000 cost copayment for the drug makes access largely prohibitive,” she notes.

“It is high time that the discrimination against those living with Alzheimer’s stops,” says McGowan, stressing the Medicare covers most of the costs for drugs and treatment of major disease, specifically cancer, diabetes, HIV/AIDS, heart disease and COVID.

According to Joseph Wendelken, RIDOH’s public information officer, funding from the CDC, for a five-year implementation grant, $500,000 for each year of the grant cycle from Sept. 30, 2023, to Sept. 29, 2028, has been secured to support the development and implementation of the State Plan. And state funds allocated to key partners such as the Office of Healthy Aging, will help to advance the work of the plan,” he says.

Sen. Sheldon Whitehouse, attending the Munich Security Conference, and Congressmen Seth Magaziner and Gabe Amo, at the Capitol expecting a vote, couldn’t attend the press conference. The federal delegation sent its support for the newly released Alzheimer’s State Plan.

A Final Note…some ideas left in the “parking lot”, but can be included in other plans

“The new 5-year State Alzheimer’s Disease and related Disorders Plan builds nicely on the prior Plan from 2019,” observes Maureen Maigret, Policy Advisor for the Senior Agenda Coalition, who also serves on the state’s ADRD Advisory Council. “The five-year plan continues to be based on a strong public health approach emphasizing education about brain health, information on available resources, early detection, training of the healthcare workforce across care settings on the care and service needs of persons dealing with dementia, caregiver supports and includes a strong focus on equity,” she says.

According to Maigret, a former Director of the former state’s Department of Elderly Affairs, it includes some new areas of focus for community involvement and attention to ‘age-friendly’ issues. “The next step — developing the Action Steps needed for Plan implementation is critical as it requires collaboration among many parties,” she says.

“The fact that we have a federal grant and dedicated staff should ensure the Plan will be a working document and guide development of needed actions moving forward. There are also a number of concrete ideas and suggestions contained in a “parking lot” that merit consideration,” says Maigret.

As to the phrase “contained in a parking lot,” Maigret noted that ideas were generated by participants in the Strategic Discussion that took place in July 2023. Some of the input that was provided did not fit into the existing plan objectives and strategies and was placed in a “parking lot,” she says.

“Many of the “parking lot” suggestions could be addressed in other State Plans such as the Rhode Island State Plan on Aging or the Rhode Island State Plan on Caregiving. As the current strategies are achieved, these ideas may be considered for inclusion in the plan, with input from stakeholders,” says Maigret.

The 2024-2029 ADRD State Plan is available for all Rhode Islanders to read online by going to https://health.ri.gov/publications/stateplans/2024-2029Alzheimers-disease-and-related-disorders.pdf, or read or downloaded, below.

This is the second in-depth policy report developed and released by Lt. Gov. Matos’s policy councils, following the 2023 release of Meeting the Housing Needs of Rhode Island’s Older Adults and Individuals with Chronic Disabilities and Illnesses from the Long Term Care Coordinating Council.

If you or someone you know needs supported related to ADRD, call 1 800-272-3900. The Alzheimer’s Association website (www.alz.org) offers a wide range of dementia and aging related resources that connect individuals  facing dementia with local programs and services.

Herb Weiss, LRI-12, serves on the state’s ADRD Advisory Council and is a Pawtucket-based writer who has covered aging, health care and medical issues for over 43 years. To purchase his books, Taking Charge: Collected Stories on Aging Boldly and a sequel, compiling weekly published articles, go to herbweiss.com.

AARP Rallies for Prescription Drug Benefit

Published in the Pawtucket Times on July 30, 2001

AARP gears up its grassroots advocacy machine to call for the expansion of Medicare at nationwide rallies, urging Congress to enact a prescription drug benefit in Medicare that is affordable, voluntary and available for all.

Using the 36th anniversary of the signing of Medicare as a backdrop, AARP Rhode Island has planned a rally today at 9:00 a.m. at the food court of the Warwick Mall to support the expansion of Medicare to cover the cost of prescription drugs. AARP officials expect hundreds of members and aging advocates at this gathering, hoping to raise the awareness of the Rhode Island congressional delegation about the importance of this policy issue.

“Advocacy and education” will be the goals of today’s event, stated AARP state Director Kathleen S. Connell. To raise the awareness of Medicare’s anniversary and the need for a prescription drug benefit, she stated that all seniors attending the rally will be give anniversary cake and coffee as well as prescription pill boxes with an informational brochure about the issue.

Connell notes that the Washington, D.C.-based advocacy group, which represents 34,000 million seniors, will use today’s Rhode Island rally to urge state lawmakers to act on adding a prescription drug package to Medicare. Costly drugs continue to hi seniors in the pocketbook, she says.

Later in the morning, AARP Rhode Island volunteers will present each of the state’s two senators and two congressman an anniversary cake with a missing piece, to symbolically represent the prescription drug benefit that is missing from the existing law, Connell said. “We will bring them a cake along with anniversary cards to remind them of Medicare’s anniversary and the high cost of prescription drugs.”

Opposing Medicare is considered to be political suicide by lawmakers, especially with the clout of senior voters. Everyone agrees that Medicare is an important federal program that helps 93 million seniors to stay healthy. Last year alone, more than 39 million Americans and their families relied on the nation’s largest health care program for their health care needs.

At present, there is no prescription drug benefit under Medicare because of a lack of political consensus as to how to pay for and implement the policy.

The final version of the Medicare Act was introduced by Rhode Island Congressman Aime J. Forand (D-RI). Connell told All About Seniors. According to Connell, during last year’s congressional elections every candidate had a favorable position on Medicare. “Here is Rhode Island Medicare’s promise has deeper roots in that our lawmakers were the prime movers of the original Medicare efforts. Our message to Rhode Island lawmakers is that we stated it here so let’s do what we need to complete it,” Connell added, noting that the final piece is a prescription drug package.

As with Congress, Rhode Island’s congressional delegation favors a prescription drug Medicare benefit and all are planning to attend today’s rally.

According to remarks that Sen. Jack Reed is expected to make, it is the right time for Congress to move on this issue. “Tremendous advancements in medical treatments, the explosive growth in the price of prescription drugs, and older Americans ever increasing reliance on medications, makes it essential that Congress enact a Medicare prescription drug benefit,” he says.

Taking his Congressional campaign pledge of making prescription drugs more affordable to older Rhode Islanders to Capito Hill, Rep. Jim Langevin also has penciled in the rally on his schedule. The state’s newest Congressman is expected to call for the passage of H.R. 1400, legislation that would drive down the cost of prescription drugs. The bill also provides protection to Medicare recipients from discriminatory pricing by drug companies. A study commissioned by the state’s congressman found that Rhode Island seniors pay on average, 78 percent more for most commonly used prescription drugs than those in five industrial countries.

Also, expect Rep. Patrick Kennedy to drop by the Warwick Mall to show his continued support for Medicare prescription drug coverage. He tells All About Seniors, “It is clear that we must bring Medicare into the 21st century with accessible and affordable insurance coverage of prescription drugs.” Over the years the Congressman has expressed concern not only for those who have no drug coverage at all but for those who pay high prices for private supplement policies or for managed care plans that include drug coverage.

Meanwhile, Republicans Sen. Lincoln Chafee will come to the rally to pitch S. 1135, a bipartisan, comprehensive bill, that would begin to overhaul Medicare and provide a universal prescription drug subsidy. The proposal also calls for different organizations to compete for Medicare’s prescription drug business. Sen. Chafee believes his approach of using a market-based competition will result in lower prices for prescriptions.

But the rising costs of prescription drugs will continue to make the prescription drug benefits a key advocacy issue for Rhode Island AARP and other senior advocacy groups at the national level. Congress must move away from legislative gridlock, away from the flowery words of support for a prescription drug package spoken at public events, to swiftly enact a viable bipartisan solution so this pressing public policy problem. Simply put, lawmakers must now realize that seniors at AARP rallies across the nation are telling you today to “walk your talk.”