1- Why did you decide to lobby for an Alzheimer's Stamp?
Friday, October 26, 2018
I was a caregiver for my dad with vascular dementia and my late husband, first with mild cognitive impairment and later with Alzheimer’s, from 1994-2012. I was sad to learn that, while Alzheimer’s had first been identified in 1906, that little progress had been made to find an effective treatment, means of prevention, or a cure and I felt, and still do, that research was key to unlocking the secrets of this very complicated and very cruel disease.
I was aware of and for years had purchased the Breast Cancer Research (BCR) Semipostal Stamp - the first semipostal in U.S. history - which was congressionally mandated and first issued in July 1998. The word “semipostal” refers to a stamp that not only raises awareness, but also raises funds for causes that have been determined to be in the national public interest. As of September 30, 2018 sales from the BCR stamp exceed $88.1 million with 70 percent of the net amount raised given to the National Institutes of Health and 30 percent given to the Medical Research Program at the Department of Defense.
I wanted a semipostal for Alzheimer’s for a number of reasons: to raise public awareness, to honor the memory of those we’ve lost to Alzheimer’s and other dementias, to show our solidarity and support of those still struggling, and to raise critically needed funds for research - one stamp at a time! With over 5 million people living with dementia in the United States and over 16 million unpaid caregivers, I felt it was something each of us could do and, together, it would have a cumulative, positive effect. One of the phases I am fond of saying is, “Individual efforts make a collective difference.”
2 - How did you get the stamp established?
This is a very long and complicated story going back to 1999 with many twists and turns. I hardly know where to start and what to include so I will just say that the Alzheimer’s stamp is the result of almost 18 years of tireless effort on the part of fellow advocate, Kathy Siggins and about 9 years of effort on my part. What I thought would be easy was anything but.
I began my campaign in 2009 writing to the “Friends of the National Alzheimer’s Project Act” and was directed to the Citizens’ Stamp Advisory Committee. Each year, the Postal Service receives thousands of letters and petitions from the American public proposing stamp subjects. Established in 1957, the Citizens’ Stamp Advisory Committee (CSAC) reviews all of the proposals and selects stamp subjects that will be of enduring interest to large segments of the American population. The Postal Service relies on CSAC to produce a balanced stamp program of approximately 25 – 30 stamp subjects each year. That was a starting point and basically got me nowhere. I didn’t know at that time, that to be successful, I would need to have legislation introduced in both the House and the Senate and broadly co-sponsored by members from both sides of the aisle. Nonetheless I began to write what became thousands of letters and emails to any and all I could think of who might help me advance this initiative.
In 2012 I was fortunate to find out about and connect with Kathy Siggins who had successfully led the national campaign for the now retired Alzheimer’s commemorative stamp. We joined forces and continued and are still continuing to pursue a congressionally mandated stamp. We currently have legislation pending in both the House (H.R. 2973 with 130 co-sponsors) and the Senate (S. 2208 with 17 co-sponsors) which, if passed, would allow for the semipostal to be extended for six years. This is the 7th time since 2005 that legislation has been introduced in the House and the 5th time in the Senate. If these bills are not passed and signed into law by the end of December, we will have to start this process over yet again the 116th session of Congress. This is most likely what will happen.
But in 2016 we saw an opening when the Postal Service called for public comments regarding the reinstatement of the Semipostal Authorization Act which, in essence, gives the Postmaster General the discretionary authority to issue semipostal stamps - under, I might add - very precise guidelines. We mounted a national campaign and engaged many, many fellow advocates and the major advocacy organizations - Alzheimer’s Association, Alzheimer’s Foundation of America, American Academy of Neurology, National Active and Retired Federal Employees Association, and UsAgainstAlzheimer’s - to join us in endorsing and advocating for this. We were successful and the first ever Alzheimer’s Disease Research Semipostal Stamp was unveiled, dedicated, and issued on November 30, 2017.
So the Alzheimer’s stamp is different from the Breast Cancer stamp in that it is not congressionally mandated but was issued under the U.S. Postal Service’s discretionary program. Under the provisions of this program, the Postal Service will issue five semipostal stamps over a 10-year period, with each stamp to be sold for no more than two years. The Alzheimer’s semipostal stamp is the first and will be sold through November 2019 followed by a Post-Traumatic Stress Disorder (PTSD) semipostal stamp to be issued in 2019.
3 - How much money has it raised and how much money from the proceeds goes to AD research?
The price of a semipostal stamp pays for the First-Class single-piece postage rate in effect at the time of purchase (currently 50 cents) plus an amount to fund causes that have been determined to be in the national public interest. The Alzheimer’s stamp currently sales for 65 cents each. By law, revenue from sales (minus postage and the reasonable reimbursement of costs to the Postal Service) is to be transferred to a selected executive agency or agencies. The funds from the Alzheimer’s Disease Research Semipostal Stamp will go to the Department of Health and Human Services, the federal agency that funds Alzheimer’s research, and will be designated to NIH.
As of September 30, 2018, 4.5 million stamps have been sold to raise $626,000 for National Institutes of Health funded dementia research.
4. How can we KEEP the stamp going? How can we extend its use in the postal service?
The first thing you can do is buy it, use it, promote it, and give it as gifts. With National Alzheimer’s Awareness Month and National Caregivers’ Month (November) and the holidays quickly approaching, this is an excellent time to do all of the above. For it to have any chance of being reissued or extended, we must prove that it is something that the public values, wants and uses.
You can also write to your representatives (one congressperson and 2 senators) and tell them why it is important to you that the stamp be extended and ask them to co-sponsor existing legislation and to find a way to get that legislation out of committee, passed, and signed into law.
If possible, I also encourage visiting your representatives when they are at home - also called “in district.” They often have town halls or public meetings where the public is invited and encouraged to voice their concerns and issues. If we don’t speak up, they won’t know what’s important to us!
5. Please explain the design of the stamp? What does it represent?
The artwork for the stamp shows an older woman, the artist’s aunt who had dementia, in profile with a caring hand (his wife’s) on her shoulder with the suggestion of sunlight behind her and clouds in front of and below her.
The artwork is both poignant and highly symbolic. The clouds symbolize the confusion of dementia and the sunlight signifies hope. The original commemorative stamp had similar artwork with the woman facing left. The semipostal has the woman facing right to signify our progress towards greater awareness, better treatments, more compassionate care, research for prevention and, hopefully, a cure. Those of us who have or had loved ones with dementia understand the juxtaposition of light and dark, despair and hope, helplessness and determination as we face or faced this journey together. I hope that this stamp will draw attention to the plight of the 5.7 million Americans living with Alzheimer’s and their 16.1 million unpaid family members and encourage each of us to do our small part in the effort to END Alzheimer’s.
6. How can we help you?
I think it would be so cool if kids began a letter writing campaign - thank you letters, words of encouragement and support to others facing difficulties, notes and cards acknowledging special events and occasions. Stamp them with an Alzheimer’s stamp and tell the recipient why you are using the stamp. Include a couple for them to use in their correspondence so you “pay it forward.” Think how many hearts would be uplifted by this simple act. My late husband, in the throes of dementia, put cards and letters he received in his pockets and carried them with him. Each time he pulled one out to read it, I imagine that his day was brightened and he felt less alone.
7. What advice do you have for kids who want to become advocates?
You are never too young or too old to make a difference. Hailey is 11 and I just celebrated my 72nd birthday. It’s important for each of us to tell our personal stories, how our families are and have been impacted by dementia, and what our personal hopes are. I love the stamp as it fits so well with my belief that we must use EVERY means available to stop this disease and, just as, no act of love is ever wasted, no act of advocacy is every wasted. It is our job to bring Alzheimer’s and other neurodegenerative disorders out of the shadows and into the public spotlight. This, like so many diseases is not a disease that only affects the individual; it affects the entire family and the family’s well being. We can’t solve a problem until and unless we are willing to talk about it. And awareness is a good first step, but advocacy requires action - our action.
Thank you for this opportunity to share my thoughts with you, Hailey, and for your help and that of your friends in advancing better care and cure. As a founding member of WomenAgainstAlzheimer’s, I must end with our hashtags and motto: #STOPAlz #WeWontWait and my personal manta: #StampOUTAlzheimers