“My mother also died from Alzheimer’s; a fellow climber told me several years ago as we hiked up a Colorado 14er. She continued, hospital “I used to raise money, here try to support research and a change in policy. I had a hope for a cure, but I gave up.” We walked quietly along as I let that sink in.
In some ways that was a defining moment for me as my own mom entered the final stages of Alzheimer’s. My mission became to give a voice to those who had given up, to speak for those who cannot speak up.
I climbed a different kind of Hill last week; Capitol Hill. I spent several days in Washington DC meeting with Congress in their offices. I wanted to thank them for their support of existing Alzheimer’s legislation and encourage them to keep pushing in spite of a difficult Washington environment.
With this phase of my 7 Summits Climb for Alzheimer’s: Memories are Everything project ending, I had their attention, now it was time for them to hear my voice – directly. For them to hear in person from someone on the front lines. I wanted to express my own views, use my own voice, like I do on this blog.
And I want to ask you to help as well. As I told them my story, I asked what could I do to help them – their answer was a bit surprising to me and consistent: tell anyone you speak to, to contact their Congressperson with their story and support for Alzheimer’s legislation. They told me hearing directly from their constituents makes a huge difference.
Use these websites to locate your Congressperson and this for your Senator. Use their contact form to be heard that now is the time to support Alzheimer’s legation. Tell them your story, make yourself heard.
Using my climbing as a metaphor, Congress needs to find the one reason to keep going and not the 1000 to turn around. In fact there are 5.4 million reasons in the US alone not counting three times that much when you include family caregivers. Yes, over 20 million people impacted by Alzheimer’s in the United States alone devastating finances, families and individuals.
I met with the offices of:
- Senator Mark Udall (D – Colorado)
- Senator Susan M. Collins (R – Maine)
- Senator Mark Warner (D-Virginia)
- Congressman Ed Markey (D-Massachusetts)
- Congressman Chris Smith (R-New Jersey)
I was very impressed with their knowledge and commitment in Alzheimer’s. I left with hope. There are currently several dementia and Alzheimer’s related bills before Congress:
National Alzheimer’s Project Act (NAPA)
The act established a National Alzheimer’s Project within the Department of Health and Human Services, to coordinate the country’s approach to research, ment and caregiving. This is a similar approached currently used for cancer and aids.
Senator Collins and Congressman Smith and Congressman Markey were co-sponsors on the Bill and it received unanimous approval from both sides of Congress, a rare occurrence.
As guidance for NAPA, a report was generated by the Alzheimer’s Association based on input from 40,000 people attending input sessions across the US. I attended the one in Colorado. The very comprehensive report listed the need to increase awareness as the first priority and increasing funding for research as number two.
Another report, LEADS, resulted from work convened by USAgainstAlzheimer’s and Alzheimer’s Foundation of America and consisted of four workgroups — one each in the areas of research, al care, long-term care support and services, and drug discovery and development. In their report, they noted 5 critical areas: research, care centers, healthcare training, incentives for new therapies and a dedicated HHS fund for investments from small business developing new ments and therapies.
I was inspired reading in this report that the $10 billion invested in basic research in HIV/AIDS between 1985 and 1995 saved $1.4 trillion in healthcare costs. This is a case study for an effective approach saving misery for millions plus trillions of dollars.
The HOPE Act
H.R.1386 – Health Outcomes, Planning, and Education for Alzheimer’s Act. This Act would amend title XVIII of the Social Security Act to provide for Medicare coverage of comprehensive Alzheimer’s disease and related dementia and services in order to improve care and outcomes for Americans living with Alzheimer’s disease and related dementias by improving detection, , and care planning.
There are many Senators and Congressmen co-sponsoring the HOPE Act. See if yours is on this list and email them to vote yes. If yours is not, email them to ask them to join
The Alzheimer’s Break-thru Act
Representatives Smith and Markey continuing their leadership for Alzheimer’s introduced the Alzheimer’s Breakthrough Act (H.R.1897) in the U.S. House of Representatives. The legislation calls to strengthen and increase the federal commitment to Alzheimer’s research at the National Institutes of Health (NIH), the nation’s largest funder of biomedical research.
An Avalanche Gaining Speed
Congress can move slow but I am encouraged by the level of attention Alzheimer’s is receiving. The human toll is astounding but in terms of numbers, the financial avalanche is coming fast and will bankrupt our social programs unless we act decisively today. According to the Alzheimer’s Break-thru Act, In fiscal year 2010, the Federal Government spent $450 million on Alzheimer’s disease research. For every $100 the Federal Government spent on Alzheimer’s disease research in fiscal year 2010, Medicare and Medicaid spent more than $28,000 for care for people with Alzheimer’s disease. We have it upside down.
The Alzheimer’s Association is very present on Capital Hill and has a good overview of the bills before Congress on their site.
Hitting the Airwaves
While in Washington, I also had the opportunity to send our message of hope, need and urgency to millions of radio and TV audiences. They asked about the 7 Summits climbs but also used my interview because November is National Alzheimer’s Awareness month. We conducted 23 interviews on Friday morning, live in many case, taped in others. If you missed it, call your station and ask them to replay it or when it will air. This was the schedule:
- 7:40 – 7:45 AM ET WDUN Radio AM Atlanta, GA Radio Live
- 8:00 – 8:10 AM ET Good News Broadcast (Internet) N/A Taped
- ?8:10 – 8:20 AM ET WYAM-IND Huntsville, AL Independent Live
- 8:20 – 8:25 AM ET KERO-ABC Bakersfield, CA ABC Live
- ?8:35 – 8:45 AM ET USA Radio Network N/A National Live
- ?8:45 – 8:50 AM ET KHGI-ABC Lincoln, NE ABC Taped
- ?8:50 – 8:55 AM ET WNWO-NBC Toledo, OH NBC Taped
- 9:00 – 9:10 AM ET Let’s Just Talk Radio N/A National Taped
- 9:10 – 9:15 AM ET KWTX-CBS Waco, TX CBS Taped
- ?9:15 – 9:20 AM ET WBUP-ABC Marquette, MI ABC Taped
- 9:20 – 9:30 AM ET KMA Radio AM Omaha, NE Radio Live
- 9:30 – 9:35 AM ET KTVE-NBC Monroe, LA NBC Taped
- 9:35 – 9:40 AM ET WNEM-CBS Flint, MI CBS Taped
- 9:40 – 9:50 AM ET WXBR Radio AM Boston, MA Radio Live
- 10:00 – 10:10 AM ET Voice of America Radio N/A Taped
- ?10:10 – 10:15 AM ET WDEF-CBS Chattanooga, TN CBS Taped
- ?10:20 – 10:30 AM ET WAMV Radio AM Roanoke, VA Radio Live
- 10:30 – 10:40 AM ET WJSS Radio AM Baltimore, MD Radio Taped
- ?11:00 – 11:05 AM ET WDAZ-ABC Fargo, ND ABC Taped
- ?11:05 – 11:10 AM ET KRIV-FOX Houston, TX FOX Taped
- ?11:10 – 11:20 AM ET KPQ Radio AM Seattle, WA Radio Taped
- 11:20 – 11:30 AM ET KAZT-IND Phoenix, AZ Independent Live
That afternoon, AARP taped me talking about my climbs and my mom for almost two hours. It will be edited and used across a variety of AARP media outlets in early 2012. I’ll keep you updated.
I was not alone in Washington, I had a chance to spend time with the Alzheimer’s Association (Mary Richards), National Family Caregivers Association (Lisa Winstel) and my long time friend Tim Armor of The Cure Alzheimer’s Fund.
I left for Antarctica exactly one year ago, just before Thanksgiving. It was a rewarding and encouraging year. I climbed my big mountain on 7 Continents, sent our message of hope, need and urgency for these climbs and from the top of the world on Mt. Everest on May 21, 2011.
We reached over 13 million people with these message and millions more this past week.
I will continue to talk to anyone who will listen. In 2012, we hope to put together a speaking tour where I can show my pictures, talk about my mom and bring a voice to everyone impacted by Alzheimer’s yesterday, today and tomorrow.
We must never turn around.
Memories are Everything