Local Health Reform Action Wraps Up

This weekend wraps up a month of in-district action where advocates asked our federal officials to pass health care reform this year that includes long-term services and supports for people with Alzheimer’s and to co-sponsor the Alzheimer’s Breakthrough Act.

I want to personally thank the thousands of advocates who carried our messages into town hall meetings and district offices. Our Washington, DC staff will follow up on all of your efforts.

Congress returns to Capitol Hill after Labor Day to move forward with health care reform legislation in September with a goal of finishing the process by the end of October. Keep an eye out for more on the progress of our priority issues in the weeks to come.

One final point – Advocacy in August wasn’t just about Congress. In this account, Liz McConnell reflects on her advocacy on behalf of Alzheimer’s with the President.

“Since attending the Obama Town Hall Meeting in Portsmouth, New Hampshire I continue to have hope. I saw hope in the faces of most of the general public who attended, the Obama staff, volunteers and the President himself. Those attending are hoping for reform of the healthcare system, and my hope is that reform will include changes in attitudes and policy regarding long-term care and increases in research funding for Alzheimer's Disease.

I came to the event as a volunteer, but also as an advocate. I want people to think broadly about healthcare reform, and include Alzheimer’s disease in that equation. I spent the first hour before my volunteer duties began distributing purple ‘Stop Alzheimer’s Now’ stickers to the waiting crowd. Inevitably, people tell me their stories of loved ones diagnosed or lost to Alzheimer’s. When they tell me their stories, they make connections with changes that must occur, and often talk about their fears of the increase in numbers of people who will be diagnosed. Without a change in the system, their fear is that they might one day be a part of those greater numbers of people diagnosed in a broken healthcare system.

During the event, there was one question relating to Medicare and the savings the administration is hoping to gain through greater efficiencies within the system to help pay for part of the cost of healthcare reform. There was concern expressed that the savings would be gained through taking away currently offered services. President Obama made assurances that the cost savings will come from efficiencies and not cuts in service.

As an advocate, I want to make sure the President keeps that promise. Alzheimer’s disease should be foremost in his mind when it comes to reform. My opportunity to remind the President of that came at the end of the event. When the President shook my hand I held onto his right hand and placed a purple ‘Stop Alzheimer’s Now’ sticker in his left hand. He put the sticker in his pants pocket.”
Who knows what he thought when he pulled that sticker out later? I like to think he spent at least a couple moments thinking about what can be done to do just that: “Stop Alzheimer’s Now”.

So, advocacy is critical to our success. But it’s also often fun, and surprisingly straightforward. If we all engage in Advocacy, we will much sooner get to our vision of “A World Without Alzheimer’s”.

Keep up the good work!
- Robert Egge

Long-term Care Services and Supports

The message -- that Advocacy is both rewarding and straightforward -- comes through in the following dispatch from Gabrielle Corey in West Virginia:

“Justin Knabb and I (decorated in purple “STOP Alzheimer’s NOW” stickers!) headed to a town hall meeting in the beautiful Erma Byrd Gallery of the University of Charleston where WV Senator Jay Rockefeller was scheduled to talk about health care reform. After Sen. Rockefeller discussed his health care reform initiatives, he opened the floor up for questions.

“Justin got to ask the Senator if he was in support of (and would co-sponsor) the Community Living Assistance Services and Support (CLASS) Act. Senator Rockefeller adamantly announced his personal support for the bill but said that the Finance Committee had declined support of it and he would therefore not become a co-sponsor.

“Unfortunately, Justin and I had to peace out for a Memory Walk meeting, but we were told by one of our advocates that Senator Rockefeller closed the meeting by mentioning his mom’s struggle with Alzheimer’s. Although Senator Rockefeller declined support for the bill, Justin and I were pleased that we got to ask the question so Senator Rockefeller knew that WV cared about including long-term care in health care reform efforts.”

Our thanks to Justin and Gabrielle. Their story makes another important point about advocacy. Just the act of asking a question often prompts our Congressmen to talk about Alzheimer’s. And when that happens, it often stays on their minds.

Senator Rockefeller is a Congressional Alzheimer champion. He is a long-time advocate of accessible and quality healthcare and is recognized as one of the Senate's strongest champions for health care reform. Senator Jay Rockefeller and Sharon Percy Rockefeller were the recipients of the sixth annual Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award.

He is also a co-sponsor of the Alzheimer’s Breakthrough Act (S.1452/HR 3286).

Act Now!
Tell your member(s) of Congress to sign on to the Alzheimer’s Breakthrough Act: http://www.alz.kintera.org/breakthroughact_actionalz

Thanks,
Robert Egge

Alzheimer's Breakthrough Act

In my last entry, I described how the work of an Alzheimer’s advocate was continuing to have an impact years later. Over the next few days, I’ll be sharing recent reports from advocates around the country who are having an exciting, positive influence during the August recess when their elected officials are back home in district.

The first example comes from Massachusetts at an event hosted by one of Alzheimer’s strongest and most steadfast Congressional champions, Congressman Ed Markey. Here’s the story as related by Jennifer Carter:

“Congressman Ed Markey held a healthcare reform forum at the newly-opened Markey Senior Center (named after his parents) in his hometown of Malden, MA on July 12th. It was an event to both ask questions of the Congressman about healthcare reform as well as to express specific concerns about the different bills and issues being discussed in Congress.

“There were about 40 different civic groups, community organizations and agencies present that evening and I was fortunate enough to have ample opportunity to talk about the importance of Alzheimer’s disease and protecting those with the disease.

“I asked about research funding as well as ending the Medicare two year waiting period and was well received, with support from the other agencies and organizations present! The Congressman also talked about his experience with his mother who had Alzheimer’s disease and his frustration with a healthcare system that would not allow more community-based care and home care. He also spoke about what he referred to as the need for CPR in healthcare- Coverage, Prevention and Research- in order to make the US health system really work for all residents in the US. Over all, the experience was wonderful – Congressman Markey, a long time supporter of the Alzheimer’s Association, is a true supporter of all the Association stands for – research, early diagnosis, quality care and dignity!”

Jennifer makes a great point that we often overlook – advocacy is fun. It’s also more straightforward than we often realize.

But don’t wait to take action!

Congressman Ed Markey is leading the fight against Alzheimer’s. He introduced the Alzheimer’s Breakthrough Act (S.1452/HR 3286) earlier this year, tell your member(s) of Congress to sign on!

Act Now: http://www.alz.kintera.org/breakthroughact_actionalz

Thanks,
Robert Egge

An approaching epidemic: Alzheimer's research underfunded

The following op-ed was published in the Charleston Gazette, Charleston, WV, on March 26, 2008
By Jane Marks

On March 18, the Alzheimer's Association released its latest collection of relevant data about all aspects of the disease and its impact, current and future, on this country. It is a devastating portrait of a looming public health epidemic, and includes this sobering fact: 10 million Baby Boomers will likely get Alzheimer's disease.

Because this developing health crisis is not being addressed by our national policymakers, the association also took out full-page ads in three national newspapers to ask the three major presidential candidates, Sens. Hillary Clinton, John McCain and Barack Obama, what they plan to do about Alzheimer's.

Alzheimer's is a degenerative disease that kills the brain and eventually the person, and at this time, there are no effective treatments to stop its progression. Today, there are 78 million Baby Boomers who are going to start turning 65 in less than three years. We're staring into the face of an epidemic but we're ignoring it:

• There are about 5 million Americans living with the disease and by midcentury, that number is expected to increase to as many as 16 million.



• In West Virginia, we have approximately 47,000 individuals with Alzheimer's.



• Every 71 seconds, someone in this country develops Alzheimer's and by 2050, the rate will be every 33 seconds.



• Today, there are between 200,000 to 500,000 people under age 65 with young-onset Alzheimer's disease or other dementias.



• Experts predict that by 2010, there will be almost a half-million new cases of Alzheimer's disease each year; and by 2050, there will be almost a million new cases per year.



• The resulting growth in spending on Medicare and Medicaid will threaten the viability of these already-stressed public programs. We do not have the health infrastructure to support or care for the rising number of people with Alzheimer's.

We can change these facts, but not with the current proposed federal research budget that underfunds medical research. Researchers are close to finding effective treatments that can slow the progression of the disease, but they are not getting funds they need. For the past five years, the NIH budget has been essentially flat. Compared to medical research inflation, NIH has actually lost 13 percent in purchasing power. The number of grants has declined significantly over this period; young researchers are leaving the field.

New and effective treatments for Alzheimer's will not only save millions of Americans and their families from tragedy and threat to retirement security, but Medicare and Medicaid could yield savings of $60 billion annually if we find these treatments. NIH underfunding is a trend that cannot continue with the next presidential administration and Congress. There is too much at stake. At this time, there is no national policy or strategy in place to deal with this 21st century public health threat. As the presidential campaign focus comes to West Virginia, I hope you will join me in asking Sens. Clinton, McCain and Obama: If you are agents of change, you need to alter the course of Alzheimer's disease and make it a thing of the past. What is your plan?

Marks is the executive director of the Alzheimer's Association's West Virginia chapter. She can be reached at jane.marks@alz.org

Senators Clinton, McCain and Obama:

Full page ad as run in the New York Times, Wall Street Journal, Washington Post, and Politico on March 18.

Alzheimer’s Association releases new Facts & Figures report

Alzheimer’s Association releases new Facts & Figures report to the nation, calls on candidates for plans to address the growing burden of Alzheimer’s. View the report: http://www.alz.org/alzheimers_disease_facts_figures.asp

CONTACT:

Media line: 312.335.4078

Toni Williams: 202.638.8666

toni.williams@alz.org