Calling on Congress to Increase Alzheimer’s Funding

Published in Woonsocket Call on February 21, 2016

Three weeks before President Obama released his Fiscal Year 2017 Budget on February 9,  Senators Susan Collins (R-ME), who chairs the U.S. Select Committee on Aging, and Amy Klobuchar (D-MN) along with seven of their colleagues, called on the Democratic President to increase funding for Alzheimer’s research as part of his last proposed budget request. Senator Sheldon Whitehouse (D-RI), who sits on the Senate Aging Panel, was among the cosigners.

In the bipartisan January 28 correspondence,  the cosigners said, “If nothing is done to change the trajectory of Alzheimer’s, the number of Americans afflicted with the disease is expected to more than triple between 2015 and 2050,” the Senators wrote.  Already our nation’s costliest disease, Alzheimer’s is projected to cost our country more than $1 trillion by 2050… Surely, we can do more for Alzheimer’s given the tremendous human and economic price of this devastating disease.”

Furthermore, cosigners warned that “$2 billion per year in federal funding is needed to meet the goal of preventing or effectively treating Alzheimer’s by 2025.” 

 Aging Groups Express Disappointment

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM), says that the Consolidated Appropriations Act, 2016, (P.L.114-113) provided $936 million in FY 2016 (a $350 million or 59.7% increase over FY 2015) for Alzheimer’s disease research at the National Institute on Aging (NIA), the nation’s leading funder of Alzheimer’s disease research.

Richtman expressed disappointment that Obama’s budget proposal did not recommend funding about the FY 2016 level for Alzheimer’s disease and dementia research, it was essentially flat funded.

“Scientists have estimated that spending at least $2 billion a year on research is necessary to accomplish the national Alzheimer’s plan goal of preventing or effectively treating Alzheimer’s disease by 2025,” says Richtman.

According to NCPSSM’s 2016 Legislative Report, “the number of people suffering from Alzheimer’s disease or a related dementia is expected to skyrocket over the next few decades because many people are living longer and the incidence of Alzheimer’s disease increases with age.”

Richtman says “making a significant investment in funding towards finding a cure and appropriate treatments for persons with Alzheimer’s disease and dementias is key to reducing the massive financial drain this disease will impose on the future of the Medicare program, along with the devastating emotional and financial toll exacted on the millions of Alzheimer’s victims and their family members and caregivers.”

The Alzheimer’s Foundation of America (AFA) also expressed disappointment in the proposed $337 million cut in research funding at NIA, contained in Obama’s 2017 Fiscal year budget proposal. “The Administration has been a champion in the fight against Alzheimer’s disease; however, we are disappointed that, in his final budget, the President is retreating,” said CEO and President Charles J. Fuschillo, Jr., of the Alzheimer’s Foundation of America (AFA). “We were hoping President Obama would take the dramatic step necessary to confront the dementia crisis in this country head-on. We will continue to work with Congressional appropriators to ensure we are on the path to a cure,” says Fuschillo, Jr.

Like NCPSSM, Cicilline, Reed, Whitehouse, and many members of congress, the New York-based AFA urged the Administration to build on the historic 60 percent increase in Alzheimer’s research funding that was included in this year’s budget that provided an additional $1 billion in research funding in the upcoming federal budget.  If done, total federal spending would reach almost $ 2 billion, an amount that Alzheimer’s experts say is necessary to finding a cure or meaningful treatment by 2025 (detailed in the National Plan to Address Alzheimer’s Disease.

According to AFA, currently Alzheimer’s disease is the sixth leading cause of death in the United States, with studies indicating it could actually be as high as the third-leading caused.  But this devastating disorder is the only disease in the top 10 for which there is neither a cure nor impactful treatment.  Furthermore, “even with the Fiscal Year 2016 funding increase, funding for Alzheimer’s lags far behind HIV/AIDS, cancer and heart disease.

On the Home Front

Congressman David N. Cicilline, who successfully led the effort in the House to increase funding for Alzheimer’s research by more than 50% last year, sees a need for increased funding a necessity in the Fiscal Year 2017. “Alzheimer’s disease afflicts 22,000 Rhode Islanders and their families each year,” the Democratic congressman representing Congressional District 1.

With Congress poised to begin hammering out next year’s federal budget, Cicilline plans to continue his efforts in the House to fight for an increase federal funding for a treatment and a cure of the devastating disorder.  He urges for Alzheimer’s disease research remain a major funding priority for policymakers at every level of government.

Senator Jack Reed, serving as a member of the Labor-HHS Appropriations Subcommittee, says, “Last year, we successfully included a $350 million boost in new spending for Alzheimer’s research, a 60% increase over the previous year.  Looking ahead to the coming fiscal year, we still have our work cut out for us in this challenging budgetary climate, but I am pushing to secure additional resources to help prevent, treat, and cure Alzheimer’s, as well as for education and outreach.”

“More and more Americans are being impacted by Alzheimer’s disease and we need a serious national commitment to finding cures and treatments.  That means making strategic investments now that will help save lives and future dollars in the long-term,” notes the Senator.

A Call for Action

Experts tell us an impending Alzheimer’s disease epidemic is now upon us. Federal and state officials are scrambling to gear up for battle, developing national and state plans detailing goals to prevent or treat the devastating disease by 2025.

According to the Rhode Island Chapter of the Alzheimer’s Association, an estimated five million Americans over age 65 are afflicted with Alzheimer’s disease in 2013.  The prevalence may well triple, to over 16 million, if research does not identify ways to prevent or treat the cognitive disorder, says the Rhode Island nonprofit.  By 2050, it’s noted that the estimated total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Congress must not act “penny wise and pound foolish” when it ultimately comes to determining the amount of federal dollars that will be poured into Alzheimer’s research in next year’s fiscal budget.  Less dollars or level funding will only increase state and federal government’s cost of care for Alzheimer’s care in every municipality in the nation.  A total of 469 seats in the Congress (34 Senate seats and all 435 House seats) are up for grabs in the upcoming presidential election in November.  Lawmakers must remember that every voter may be personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.  That ultimately becomes a very powerful message to Capitol Hill that it is important to increase the funding to NIA to find the cure.

 

 

New Budget Deal Protects Seniors’ Pocketbooks

Published in Woonsocket Call on November 1, 2015

Just days after a Republican-controlled House passed legislation with a vote of 266-167 to prevent the U.S. government from going into default on its debt obligations on Nov. 3, also averting a potential federal government shutdown next month, on Friday, Oct.30, the Republican-led upper chamber followed suit.  Just after 3:00 a.m., the Senate voted 64-35 to approve a two-year bipartisan budget plan sending the bill to President Obama for his signature.

Before Friday’s Senate vote, on Thursday afternoon GOP Presidential contender Sen. Rand Paul (R-Ky.)’s 20 minute filibuster fizzled, with Senate leadership moving forward for the budget bills consideration.  The measure had strong support for passage.  Retiring House GOP Speaker John Boehner with Congressional leaders from both political parties and President Barack Obama pulled together, putting aside differences, to craft the bill.

.           Before the companion legislation was taken up by the House and Senate, in a statement AARP CEO Jo Ann Jenkins, representing 38 million baby boomers and seniors, called on Congressional leaders and their members to support the bipartisan agreement, one that financially protect older Americans.   Jenkins detailed a number of provisions within the 144 page bill that would “reduce skyrocketing Medicare Part B premiums and alleviate the challenges faced by the Social Security Disability Insurance (SSDI) Trust Fund.”

Rhode Island Lawmakers Give Thumbs Up

U.S. Senator Jack Reed (D-RI), called the bipartisan budget agreement “a credible compromise,” noting that “It is only a two-year patch, but it puts us on a much better path forward.   Reed, who sits on the powerful Appropriations Committee, called on the House and Senate Appropriations committees to “quickly reach consensus and produce a detailed omnibus spending package by the Dec. 11 deadline.”

“This budget deal will provide much-need relief from harmful sequester cuts and give the nation a measure of certainly we have lacked amid the patchwork of stop-gap spending bills in recent years,” added U.S. Senator Sheldon Whitehouse (D-RI).

Whitehouse noted the bipartisan budget deal provides “much-needed relief from harmful sequester cuts and gives the nation a measure of certainty it has “lacked amid the patchwork of stop-gap spending bills passed in recent years.”

With 37,000 Rhode Islander’s relying on the SSDI program it was easy for Representative David Cicilline (D-RI) to support the bipartisan compromise budget plan because it “prevents a 20 percent cut to SSDI benefits and extends the solvency of this critical program an additional seven years, as well as protecting thousands of Rhode Island seniors from an increase in their Medicare premiums.”

“We need to do more to protect Social Security benefits for seniors, ensure cost-of-living adjustments are calculated in a way that accounts for their needs, and lift the cap on payroll taxes so millionaires and billionaires pay their fair share,” said Rhode Island’s Democratic Congressman.

On the side line, aging advocates were also closely watching the action in both chambers, too.  “We are glad that the Budget passed by Congress this week lets people who rely on Medicare breathe a bit easier – knowing their premiums and deducible will not skyrocket next year,” said Judith Stein, founder and executive director of the Center for Medicare Advocacy. “However, we still have concerns about the way in which the Part B cost-sharing resolution is paid for, and concerns about the expenses underlying the original Part B increases.”

“The Center continues to urge law-makers to join Congressman Courtney (CT-2) in asking Secretary Burwell to investigate and fix the underlying reasons for the huge increase in Part B costs,” said Stein. “Much of the increase seems to come from parallel increases in billing inpatient hospital care to Part B – which was never meant to pay for such care – through the use of so-called ‘outpatient’ Observation Status.”

Older Americans Protected by Enacted Budget Plan

The Bipartisan Budget Act of 2015 would raise the nation’s debt ceiling through March 2017, allowing the government to borrow to pay its debt. During these two years it allow Congressional lawmakers to lift budget caps for defense and domestic programs by $80 billion.

The passed budget plan derails a 52 percent Medicare Part B premium increase to 30 percent of beneficiaries, which would have hit millions of seniors in their wallets next year. Similarly, the deductible was projected to increase for these individuals to $223 next year.  But thanks to the budget agreement passed this week, the deductible will instead have a more modest increase from the current amount of $147 to approximately $167.

A general fund loan to the Medicare trust fund lessens the premium and deducible increases. Beneficiaries will repay this loan by a $3 per month premium surcharge over a five-year period.

According to the enacted budget plan, next year, only the 30 percent of the beneficiaries hit by the premium increase would pay this $3 premium surcharge.  In 2017 and beyond, all Medicare beneficiaries not subject to the hold harmless provision in a given year would pay a $3 monthly surcharge theoretically until the general fund loan is repaid..

The federal Centers for Medicare and Medicaid Services is expected to announce final premiums for 2016 by the beginning of November.

Keeping SSDI Afloat

The enacted budget plan also prevents a 20 percent cut in Social Security Disability Insurance (SSDI) benefits that would have occurred in late 2016 impacting 11 million recipients nationwide.  The enacted law now ensures at least 7 years of certainty that SSDI will pay full benefits.  Now, the passed budget measure “reallocates” a small percentage of the Social Security payroll tax to the SSDI program.  This has occurred 11 times.  But, GOP lawmakers have blocked recent efforts to transfer funds as a bargaining chip to force Congress and the Obama Administration to make cuts to Social Security benefits.

The new law would also tightens up the SSDI review process by requiring a physician or psychologist to review applications before a decision is made.  It ensures that application reviews are uniform nationally.  Finally, it requires the Social Security Administration to reject medical evidence presented in a disability application that was provided by “unlicensed” or “unsanctioned” physicians.

It also attacks Social Security fraud and abuse by providing additional funding to contact case reviews ensuring the applicants are entitled to the benefits, improves the fraud-fighting capacity of the SSA’s Office of Inspector General and increases penalties for those physicians, lawyers, translators who perpetuate fraud.

Finally, the bipartisan budget agreement closes loopholes in the current SSA law that allows higher-income recipients to exploit the rules for applying for benefits, with the goal of receiving large pension checks than Congress intended, and which most retirees are able to receive.

The savings made in the Social Security and SSDI programs remain in the Social Security trust funds and can only be used to pay for future benefits.

With Representative Paul D. Ryan now becoming the 62nd speaker of the House, the nation waits to see if the Wisconsin lawmaker has the special political skills to rein in the ultra-conservative wing of his party.  With only 374 days before the upcoming 2016  presidential and congressional elections America’s federal lawmakers must begin to work together to craft laws that will enhance the quality of life of the nation’s retirees.  Compromise is not a dirty word to those residing outside the Washington, DC beltway.  Gridlock is.

Susan Sweet Takes the Reins of AARP’s Community Educational Initiative

Published in Pawtucket Times, July 11, 2013 

            Accepting the challenge offered by organizers of Rhode Island AARP’s “You’ve Earned a Say”, veteran advocate and organizer, Susan L. Sweet, has come out of semi-retirement, stepping to the plate to coordinate a series of “community conversations”  to continue efforts of promoting dialogue throughout the OceanState on the future of Social Security and Medicare.

             After years of paying into Medicare and Social Security, AARP, a Washington, D.C.-based group representing 40 million Americans, believes that age 50 plus aging baby boomers and older persons deserve a voice in the Inside the Beltway debates that impacts their future retirement years.  “You’ve Earned a Say” is a AARP-led national conversation committed to providing people with critical information about the domestic policy proposals being debated in Congress — simply put without the political jargon and spin.

             Regional events to be held in Warwick, Pawtucket and elsewhere – free and open to all — will be scheduled throughout the summer into the fall as Congress and  President Barack Obama begin to weigh in on policy changes for these critical domestic programs.

             “Susan has a remarkable knack for encouraging people to become actively engaged in matters that deserve public attention and involvement,” said AARP State Director Kathleen Connell. “We are fortunate that she has agreed to take this on. She will bring great energy to AARP’s ‘You’ve Earned a Say’ outreach and engagement efforts. The fate of Social Security and Medicare is important to all Rhode Islanders and we hope many will take part in our forums. Working with our staff and other AARP volunteers, Susan will be a tremendous asset. She is a force of nature.”   After seeing her in action for over 18 years this columnist agrees.

             A veteran of the 1960s civil rights movement and the War on Poverty, Sweet joined the state Department of Community Affairs (DCA) in 1972, where she founded and led numerous Rhode Island Division of Women’s programs.  She worked with the General Assembly to secure the first state funding for Domestic Violence Shelters.  While at the DCA, she also wrote a grant, funded by federal dollars, to establish community health centers throughout the state.

             In the late ‘80s and ‘90s, Sweet was Associate Director of the R. I. Department of Elderly Affairs (DEA), creating and developing a number of award winning programs, including the RI Pharmaceutical Assistance to the Elderly Program, popularly known as RIPAE.  She initiated a first in the nation statewide Elder Housing Security program and various legislative and programmatic initiatives to assist elders in the state.

             Sweet, a Rumford resident, earned the monikor as the mother of RIPAE by initiating, planning, organizing, managing and finally directing the state program that would ultimately assist 32,000 Rhode Island  limited income seniors with state co-payment assistance for prescription drugs. After leaving the DEA, three attempts were made by sitting governors (both Independent and Republican) to eliminate the program and the advocate led all three successful efforts to restore RIPAE funding in the state budget.

             After retiring as DEA’s Associate Director in 2000, Sweet has been a consultant and lobbyist on Smith Hill for nonprofit agencies and an advocate for vulnerable populations and issues such as immigrants, domestic violence, homeless and seniors. Her clients have included the Senior Centers Directors Association, the Alliance for Better Long Term Care, International Institute, the Coalition Against Domestic Violence and others.

             On a personal note, Sweet, 72, cares for five adopted cats, all abandoned or abused, putters in her large backyard garden, spends time with two children and two grandchildren.  Being an expert on Roman history she reads many tomes on that era, and on world archeology and history.

Social Security on the Chopping Block

               Democratic President Obama and a Democrat-controlled Senate and a GOP House of Representatives are trying to reach a budget deal in the coming months. President Obama has proposed a change that would slash $127 billion from Social Security benefits over the next ten years, hurting many older beneficiaries who are already living on very tight budgets stretched far to thin by costly prescriptions, rising utilities, and increased health care costs. AARP and other aging groups are pushing hard against these cuts, mobilizing their troops to oppose. 

             Social Security is a self-financed program, not a piggy bank for deficit reduction, noting that aging baby boomers and seniors have paid into this pension program their entire working lives.  According to AARP polls, older Americans expect their elected representatives in Washington to fiscally secure Social Security for future generations and keep the promise Congress made 78 years ago: that this retirement program would provide a financial safety network in their later years.

             According to Sweet, the proposed chained CPI is a flawed policy that will hit Social Security beneficiaries in their pocketbook. Each year the Social Security Administration (SSA) makes the determination, based on market prices, whether to adjust the Social Security payment to beneficiaries and, if so, by how much.  The chained CPI is a formula that assumes that people will simply buy cheaper products.  “But that is not the case for seniors, whose greatest expenses are health care, utilities and other costs that can’t often be replaced,” So, the chained CPI is just a term that means that the average senior will lose more than $2,000 in the next 10 years and even more after that.  It also means that people reaching retirement age and/or planning for retirement will have even more of a reduction.

             Furthermore, Sweet finds it extremely disappointing that a Democrat President would offer, as an opening gambit in the budget process, a reduction in Social Security benefits by using a new and inappropriate method for computing Cost Of Living Adjustments (COLAs).  In fact, Social Security, a program that pays for itself and has never run a deficit, should not be used to offset deficits in other programs. We should be talking about how to strengthen the program, not reducing it, she states.

 State Pension Changes Hits Retirees, Too

             But, with Social Security COLA cuts looming if Congress takes legislative action to endorse chained CPIs, aging baby boomers in the OceanState who will shortly retire or those already receiving their municipal or state pension checks will see less retirement income because of actions of the Rhode Island General Assembly.

                 “Any additional loss of retirement income is certainly a concern for public employees who, as a result of the 2011 slashes in their promised retirement income,” said AARP’s Connell. “Lawmakers need to understand that there are earned benefits. People plan their retirement based on what they are told they can count on – whether it is a public or private pension, or Social Security. As we have said for the past two years, Congress and the President should not address the deficit by pursuing harmful cuts to Social Security and Medicare.” 

             Sweet agrees stating that “Rhode Island was at the very front of the attack on older folks with an extraordinary coup which stripped public service retirees and workers of hard earned compensation for their work. They called it “pension reform”, but that is not what it was.  Everyone knows that it is not fair to change the rules in the middle of the game and certainly not after the game is over.  But that is what is happening around the country, in private and public employment.”

             Social Security and other pensions are not “entitlement programs” but more like insurance programs that you pay into with the promise and expectation of a certain coverage, notes Sweet. The aging advocate asks: “Should the insurance company be allowed to change the benefits upon payout? Should government (state or federal) cut benefits to retirees absent the most pressing of circumstances?”

             But, certainly in the case of Social Security, there is no emergency, but rather a timely need to insure that the program can continue to fulfill its mission, she says.

             Robert A. Walsh, Jr., Executive Director of NEA, National Education Association Rhode Island, representing 12,000 members in education and in city and state government, refers to the recalculation of COLAs by using chained CPIs as “voodoo economics.”  While supporters of this recalculation policy note it reins in Social Security costs, they should at least be honest about the fact that it personally hits the retiree financially, right in their checks, he says.  “If you’re going to cut people’s COLAs, just be honest about it,” he says.

             Many of Walsh’s union members only receive their city or state pension as they are not eligible for Social Security benefits. People retired with certain expectations [as to what retirement income they had] and to make pension changes after they retire is patently unfair, says Walsh, noting they had no opportunity to plan for the decreased income.

             Throughout the nation there is a growing movement of aging baby boomers and seniors, fueled by AARP’s educational efforts, who tell Congress to simply  “Leave Social Security Alone”.  Strengthen it for future generations, they say.

             Sweet and millions of others tell Washington politicians that “Social Security is not a cookie jar to fund other programs.”   Sweet says you can make this known to Rhode Island’s Congressional Delegation, Senators Reed and Whitehouse, Representatives Cicciline and Langevin, by attending the upcoming “community conversations.”  Support their position opposing the change in the COLA and urge them to support Social Security by leaving it out of any budget deal, she urges. 

             Herb Weiss LRI ’12 is a Pawtucket-based writer who covers health care, aging and medical issues.  He can be reached at hweissri@aol.com