50/50 and Neurofibrosarcoma

•October 17, 2011 • Leave a Comment

Saturday night I finally got to my local movie theater to see 50/50, a film starring Seth Rogen and Joseph Gordon-Levitt based on the true story of Will Reiser (Producer Red State Diaries, Da Ali G Show), who wrote the film.

**50/50 is the story of a guy’s transformative and, yes, sometimes funny journey to health – drawing its emotional core from Will Reiser’s own experience with cancer and reminding us that friendship and love, no matter what bizarre turns they take, are the greatest healers.

Read a piece Will Reiser posted last month in Esquire, “How To Be Really, Really Sick: Advice and affirmations on living with illness from the cancer survivor.”

Will Reiser was diagnosed with a rare form of spinal cancer at 25, when doctors discovered a cancerous tumor crawling along Reiser’s spinal column. I found this film incredibly moving because it recalled memories of my friend Craig Nolan, who in 2005 lost his battle with anaplastic large-cell lymphoma (ALCL), a rare, aggressive form of non-Hodgkin’s lymphoma that arises from T-cells (the reason I set out to create MarbleRoad).

In the film, Adam (played by Joseph Gordon-Levitt) is diagnosed with a malignant peripheral nerve sheath tumor, aka “malignant schwannoma” or “neurofibrosarcoma”.

Listen to this interview with Will Reiser from Fresh Air on NPR (while noting that the characters of Seth and Joseph are actually employees at a public radio station); and go see this movie.

Soft tissue sarcomas are very rare, and represent only about 1% of all cancers diagnosed each year. Neurofibrosarcomas are particularly rare, as they comprise only about 6% of that 1%; and are particularly interesting in a clinical sense because they are caused by a mutation on a tumor suppressor gene (p53) on the 17p chromosome. About half the cases are diagnosed in people with neurofibromatosis; a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be benign or may cause serious damage by compressing nerves and other tissues.

If you have some time, head over to the Children’s Tumor Foundation website. The Children’s Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

The mission of The Children’s Tumor Foundation is to:

• Encourage and support research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders;
• Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information;
• Assist in the development of clinical centers, best practices, and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals; and,
• Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population’s understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources.

The CLASS Act and Caregiver Village

•October 17, 2011 • Leave a Comment

Back in February we shared some information regarding a bevy of new publications in the rare disease space, including Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers:

** MarbleRoad board member Catherine Calhoun has published her story in a chapter in Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers. Proceeds from the book will support the Calhoun Bone Pain Project (her son Billy’s Bone Research Fund), along with several other charities of each author’s affiliation. Order your copy on Amazon.com today!

Caregivers are people who take care of other adults, often parents or spouses, or children with special medical needs. Some caregivers are family members; others are paid. They help with:

• Food shopping and cooking
• House cleaning
• Paying bills
• Giving medicine
• Going to the toilet, bathing and dressing
• Eating
• Providing company and emotional support

Caregiving is hard, and caregivers of chronically ill people often feel stress. They are “on call” 24 hours a day, 7 days a week.

Last Friday, the White House and the US Department of Health and Human Services pulled the plug on the Community Living Assistance Services and Supports Act, known as the “CLASS Act” (see previous MarbleRoad blog post on the CLASS Act); a provision in the landmark Patient Protection and Affordable Care Act ,which would have created a new long-term care insurance plan option for families.

The late Senator Ted Kennedy was a major champion for the inclusion of the CLASS Act in PPACA, which would have helped to support the needs of the estimated 65 million Americans that provide unpaid care to seniors or people with disabilities. From the White House Blog back in March 2010:

**CLASS Act benefits can be used to compensate family caregivers, who often make huge financial sacrifices. And receiving benefits from this program would not have any effect on eligibility for other government programs.

** The health reform legislation also creates a new Medicare pilot program aimed at helping patients and caregivers successfully negotiate the transition from a hospital stay to their homes or other care settings. And it provides new funding for Aging and Disability Resource Centers, which provide information and assistance to caregivers and people with long-term care needs.

In an Op-Ed piece in the HUFF/POST50, DHHS Secretary Kathleen Sebelius shared that:

… our department has worked steadily to find a financially sustainable model for CLASS. Over the last 19 months, we’ve examined the long-term care market, modeled possible plan designs, and studied the CLASS statute, consulting at every step of the way with outside actuaries, insurers, and consumer groups.

When it became clear that most basic benefit plans wouldn’t work, we looked at other possibilities. Recognizing the enormous need in this country for better long-term care insurance options, we cast as wide a net as possible in searching for a model that could succeed. But as a report our department is releasing today shows, we have not identified a way to make CLASS work at this time.

Memorandum on the CLASS Program from Kathy Greenlee, CLASS Administrator to Secretary Sebelius

A Report on the Actuarial, Marketing, and Legal Analyses of the CLASS Program by the US Department of Health and Human Services

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On a related note, I was recently introduced to Caregiver Village: A Village of support, friendship and fun.

**At Caregiver Village, we’re here to serve the needs and concerns of today’s caregivers. Its a place to connect with other people who face similar challenges, obtain valuable resources, share journal entries and read those of others about caregiving journeys. Visitors can meet well-known authors and participate in their book clubs and play our Village Chronicles game, for learning or just for fun. The Village Chronicles is an entertaining on-line mystery adventure story that integrates caregiving situations into a game-like atmosphere. You can connect with your friends, find links to valuable resources within Caregiver Village, solve puzzles, achieve ranks, and earn badges. It’s a learning experience that is engaging and fun.

Right now, for each new person that joins Caregiver Village, they have agreed to donate $1 to charity, including Alzheimer’s Association, Autism Society, Autism Speaks, CancerCare, Libbie’s Adult Day Care, National Military Family Association, Police Wives, and the United Mitochondrial Disease Foundation.

The draw to Caregiver Village and the advantages it offers are many:

• It’s a game – its fun. Games work because they’re fun. They’re fun because they require focus and effort and result in achievements that are specific and tangible. The Village Chronicles virtual game is built to be fun. It requires focus, it takes effort to solve the puzzles (and the ultimate mystery of the story that continues episode to episode), and achievements are earned along the way. It’s a uniquely powerful way for family caregivers to learn better self-care, stress management skills and positive attitudes about their caregiving work.
• It builds community. Linking with other people helps us understand and achieve things we couldn’t possibly realize alone, in a way that fills a deep human need for connection and companionship. In Caregiver Village, neighbors help each other by providing advice, recommending resources and offering crucial words of encouragement and support. Groups – called “book clubs” in Village terms – are led by experts who can help guide, coach and nurture the strength of the individual and the group. It’s just more fun to be a part of a team.
• It facilitates sharing and affirms choice. In Caregiver Village neighbors use a time-tested technique of journaling their experience to reinforce the “choice” aspect of their work. It’s a way to express emotions, process difficult experiences and gain deeper understanding into the complex and challenging life of a caregiver, arriving at a re-affirmation of the choice involved in their work. Caregiver Village neighbors may choose to display this choice, too, in the form of a badge that proclaims, “I’m a Proud Family Caregiver – my time, my choice, my gift.”
• It’s loaded with tools. Mastering really challenging games often means acquiring an array of tools to help you succeed. For caregivers, tools can help them succeed, as well. Tools provided in Caregiver Village include information about books, organizations, products and services that can offer tangible support. It includes exclusive Caregiver Village tip sheets and online training courses that offer tricks and tips from the experts who have mastered the “game” of caregiving.
• Family caregivers provide well over 90% of all caregiving services in the U.S. today. It’s time to break the pattern of stress, sickness, despair and dysfunction that represents family caregiving today. It’s time, with Caregiver Village, to change the lives of family caregivers.

The Yellow Bird Project (via Sarah Grothjan)

•September 6, 2011 • Leave a Comment

The Yellow Bird Project When someone asks me who I am or what I do, I typically default to any combination of journalist, student, writer, intern. I think these descriptions embody just about every person I currently attend college with at the E.W. Scripps School of Journalism. It's just the largest chunk of who we are at this point: students defined by our majors, friends, family and interests. However, there is one other title I have earned yet very rarely attach to m … Read More

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NeuroDetour: A Conversation with Melanie Miller

•August 2, 2011 • Leave a Comment

Late one Sunday evening in July, as I headed back to DC after preparing in NY/NJ for The Flammable Heart Exhibition, coming up during National Health Center Week in August, I decided to stop off in Philadelphia to hang out with Melanie Miller. Melanie was initially going to be one of the artists exhibiting at the MarbleRoad Launch Party and Fundraising Event on Make a Difference Day in October of last year, except due to her illness(es) and related treatment, she was unable to participate.

Melanie is a creative and uniquely spirited individual who embodies everything that MarbleRoad is trying to accomplish.

On September 18, 2008, partially paralyzed, Melanie was diagnosed with Transverse Myelitis (TM), a rare and debilitating neurological disorder. A former nationally presented multimedia choreographer/dancer; artistic director of Junction Dance Theatre; and senior copywriter, Melanie turned to visual art, blogging, and one-of-a-kind cane and accessory fashion designing (under the name neurochic), after becoming sick getting, getting fired, and becoming physically and cognitively disabled as a result of the TM. Soon, related autoimmune-neurological disorders continued to emerge, ruling her body and mind, including Multiple Sclerosis (MS), Encephalitis, and Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy.

The CRPS is a chronic neurological syndrome characterized by severe burning pain, pathological chances in the bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. Ketamine, a dissociative anesthetic, is being used in the treatment of CRPS with great success. The theory of ketamine use in CRPS/RSD is primarily advanced by neurologist Dr. Robert J. Schwartzman of Drexel University College of Medicine in Philadelphia, Melanie’s doctor. The hypothesis is that ketamine blocks NMDA receptors which might reboot aberrant brain activity. Treatment in the US generally consists of a low dose subanesethesia ketamine infusion of between 10–90 mg per hour over several treatment days, this can be delivered as an outpatient procedure.

Ketamine treatments pretty much knock Melanie out for several days, and so between flare ups of the CRPS and the ketamine treatments, Melanie has brief, limited periods of time where she feels “normal” enough to work, hang out with friends/family, etc.

When I caught up with Melanie, she was excited about several of her current projects, including neurochic; participating in The Flammable Heart Exhibition; and femme: a group show at the James Oliver Gallery in Philadelphia. The latter, which opened Saturday, June 18 and runs through Aug. 20, is an exploration of femininity (or lack thereof), featuring a mixed media exhibition that includes paintings, photography, sculpture, video art, glass and installation, all exploring the term “femme”.

Her cats, Max and Leo, offered me some brotherly love (Leo in particular) as we flipped through her massive portfolio: mixed media work, primarily watercolor, pen & ink; all of which helped to illustrate her story—

Friday, July 29, 2011 was Melanie’s 36th birthday. Even in chronic pain and on large quantities of medication, Melanie is still blooming with creativity, and the drive and ambition of the non-profit founder and ceo she once was. Her kitties fill a void of what was once a rich social network that included a husband, family, friends and colleagues. Melanie’s mom, Maureen, who now also has Power of Attorney over Melanie’s finances and rising medical costs, had just been by to help clean and straighten up the apartment. And the work we went through was accessorized by gauze, medical tape, latex gloves, Lidoderm (lidocaine transdermal), and even Melanie’s own blood (with a protective layer of acrylic coating, of course).

For most of Melanie’s early to mid thirties, she has had to both adjust to her own shifting realities and identity, and had to grow as an advocate and activist. She shared with me videos from her days with Junction Dance Theatre, when she was able to gracefully dance and leap across a stage in front of hundreds of people. And she shared with me stories about how Aetna refused to pay for her intravenous immunoglobulin (IVIG) treatment and so she has had to go as long as 3-6 months without it… For neurological and autoimmune diseases 2 grams per kilogram of body weight is implemented for three to six months over a five day course once a month. Then maintenance therapy of 100 to 400 mg/kg of body weight every 3 to 4 weeks follows, but the cost is prohibitive, especially when your health insurance refuses to pay, at well over $50/g. ($10,000 for a 100 kg (220 lbs) person at 2g/kg). Melanie currently has some coverage from Medicare, Social Security Disability Insurance (SSDI), and Mutual of Omaha; but she still has significant need of assistance due to high co-pays, co-insurance, and deductibles.

Melanie gives hope and inspiration to everyone she crosses paths with, and to the many readers and subscribers to her award winning blog. I’m glad to have had the opportunity to meet and talk with Melanie, and I look forward to spending more time with her in the future. I am ecstatic that Melanie has agreed to participate in The Flammable Heart Exhibition; below are a few selections of her work that we will be exhibiting:

Please join us at the exhibition and support Melanie, and the many others who are dealing with complex illnesses every day; rare, chronic, debilitating, disabling, and life-threatening diseases and disorders that wont knock them off their feet… because their hearts are on fire.

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MarbleRoad is a non-profit, 501(c)(3) public charity whose mission is to connect people who have complex illnesses with the resources they need to help them improve their lives. MarbleRoad provides financial assistance and support for people who have been impacted by a rare disease diagnosis and/or who are patients of community health centers in need of specialty care services. To raise funds, one of MarbleRoad’s primary activities is the IndieMatch campaign, which partners with independent artists and musicians in philanthropic opportunities, including as many as three art exhibitions/sales per year by artists and of work that have been influenced by a health care experience.

Advocacy Update and The Flammable Heart Exhibition

•July 4, 2011 • Leave a Comment

Yes, it might appear I have gone dark or rogue since my last blog post on Rare Disease Day back in February. Well, that’s only because there’s not nearly enough time in the day to do everything we need to do, is there? So here we have a roundup of activities that have happened and/or been in the planning stages over the last several months:

Legislation

“The Charles August Long Undiagnosed Diseases Act of 2011”

Back in February 2010, Heather Long was a guest blogger on the MarbleRoad blog site. She talked about what it was like to sit and watch her son’s life be taken from him, and her, by a disease which had no name – he was never diagnosed. She shared with us:

For three years I sought in vain to find someone who could tell me what was wrong with him. Over and over again, I was told, “We can’t tell you what this is, but we can tell you what it isn’t.” All the tests we had run did nothing to further our investigation, but only planted us right back at square one every time. Even more distressing was the fact that each of Cal’s specialists cited statistics as to how many children they had seen within their respective practices that they could actually render a diagnosis for. Cal’s neuromuscular specialist told me that he could only diagnose 40 to 60 percent of the children he saw. The genetic counselor also told me that they were only able to diagnose 50 percent of the children they saw, the other half severely affected by some unknown disease like Cal.

Well, Heather’s fight to get an undiagnosed disease registry up and running is not over. On July 27, 2011 Congressman John Carter will introduce “The Charles August Long Undiagnosed Diseases Act of 2011”. Also on that day, at 10:00 am there will be a press conference hosted by Congressman John Carter and Congressman David Dreier regarding the introduction of this legislation. Heather helped draft this legislation, which creates an “Undiagnosed Disease Registry” to be run by the NIH, and will also participate in the press conference.

The CAL Registry will be accessed by medical providers and allows them to input symptoms, treatments, etc. (while abiding by all privacy and HIPAA laws). From this information, providers can search for other patients that have similar symptoms/signs (and the subsequent treatment, etc.) and initiate/sustain CALlaborative efforts with those physicians handling the similar cases in order to help diagnose and treat undiagnosed diseases and improve the outcomes of their patients. Further, since The CAL Registry will be open to all medical providers as well as government/federal agencies (such as the VA). The CALregistry will also be able to help the VA in diagnosing and treating the men and women in our military who are suffering from undiagnosed diseases associated with their service (i.e. agent orange exposure). Carter’s office has secured two endorsements; one from the Military Officers Association of America (“MOAA”) and one from AMVETS (American Veterans). Moreover, Dennis J. Kuchinich a democrat from Ohio’s 10th District has agreed to be one of the original co-sponsors.

If this legislation is passed, $5,000,000 will be appropriated in FY2012 and the registry will be operational by September 30, 2013.

You may also want to check out “In Need of Diagnosis” – INOD advocates for changes in the medical system that will increase the accuracy and timeliness of diagnosis.  It is a resource center for people who suffer with illnesses that elude diagnosis. There’s also a petition on Change.org to declare March 5 World Undiagnosed Day.

Appropriations

As of June 20, the National Association of Community Health Centers (NACHC) began a campaign to protect much needed resources for millions of uninsured and underinsured families around the country. After NACHC staff met with top government officials from the White House, Department of Health and Human Services, and Congressional Leadership of both parties, they reported out that they had heard a clear and consistent message:  that the current discussions/negotiations related to the FY2012 and future Budgets, coupled with public demands for significant Deficit Reduction, will have a dramatic impact on many domestic programs.

The risks involved:

  • Even if the Budget Deal that negotiators are currently discussing achieves spending reductions at the lower end of the $1-4 trillion range over the next ten year and it results in further cuts to the CHC program’s Base Appropriation anywhere near the $600 million that was cut in FY2011— it would eliminate ALL Federal funding for the Health Centers program within 3 years.
  • Worse still, even if Medicaid is NOT Block-granted or capped, most experts believe that some reductions in spending will be required. States are already clamoring for greater flexibility through Waivers and some are calling for ending the current Health Center Prospective Payment System (PPS).  Such actions would result in a reduction of CHC Medicaid payments by AT LEAST 50%.

As a result, on June 30, over 12,000 health center advocates called the White House and made more than 30,000 calls to Congress.

Nevertheless, the budget cutting debate has not been resolved and both Medicaid and Health Center funding remain at risk.

Events

The Walking Gallery

On June 7, 2011 I was a “walker” in Regina Holliday‘s Walking Gallery of health care stories and advocacy at Kaiser Permanente’s new Center for Total Health.  Read the story behind my jacket and see photos of it here. Here is a micro doc that Eidolon Films put together:

We have been filming Regina since she lost her beloved husband Fred to kidney cancer in 2009. Since then, she has been using her paintbrushes to advocate for better access, more transparency and safety in our health care system. Her art advocacy first began with a rice paper mural placed at 4 in the morning on the wall of a DC deli. Next was a gas station, where over months of tireless work she painted a massive mural titled 73 Cents.  She’s painted canvases in plain air and even the backs of business jackets worn by activists.  It’s this last surface that has inspired her latest project: The Walking Gallery.  That’s right, a gallery of moving art!  Best of all, it can go wherever the wearer goes.  You know how much we love art that says something. Well, Regina’s art sings it aloud, shouts it from the rooftops, and stops you in your tracks.  She reminds us that our work as artists can indeed make a difference and so it’s been our absolute pleasure to share her story.

The Flammable Heart Exhibition

August 7-13, 2011 will be National Health Center Week. To celebrate the great work that health centers are doing all over the country, and to raise money to support MarbleRoad’s mission to offer support services and financial assistance for patients with complex illness, I will be curating The Flammable Heart Exhibition in New York City.

For the exhibition, participating artists and/or their work have each been inspired by a health care experience. Some of the artists in the exhibition include those who work at health related non-profits such as the DC Primary Care Association and the National Kidney Foundation; others have been influenced by organ donation or life-altering accidents; while others focus on themes of love, pain, emotion and the human experience.

A portion of the proceeds will benefit Lutheran Family Health Centers in Brooklyn, NY.

Happy 4th of July America!

Rare Disease Day 2011: Research, Action and Impact

•February 27, 2011 • Leave a Comment

MarbleRoad is a proud partner, along with more than 500 other organizations, for Rare Disease Day 2011. Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

Rare Disease affects over 250 million people worldwide, and the largest percentage is children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. In order to really help this community they need to be viewed as one, one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one.

This year, MarbleRoad is supporting at least two initiatives/events on Rare Disease Day:

  1. The Global Genes Project—The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign will broadly promote the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope ~ the blue denim ribbon.
  2. Rare Disease Legislative Advocates Cocktail Reception and Movie Screening—Cocktail Reception & Private Screening of Extraordinary Measures with Special Guest John Crowley, the father who inspired the movie. . There will be a short education presentation about what is needed to bring lifesaving treatments to the millions of Americans affected by rare diseases. The event is hosted by Legislative Advocates, supported by Kakkis EveryLife Foundation, and sponsored by PhRMA.

Rare Spotlight – Kidney Disease

Much of MarbleRoad’s work thus far has been focused on rare kidney disease, such as renal cell carcinoma (kidney cancer), polycystic kidney disease, and Focal Segmental Glomerulosclerosis (FSGS). MarbleRoad has talked/worked with Regina Holliday, an artist/advocate who lost her husband to kidney cancer; e-Patient Dave DeBronkart, a survivor of Stage IV kidney cancer;  Julie Gidion-Smith, a skilled photographer, organ donor/recipient and FSGS survivor; and many others to promote education and awareness of rare disease and complex illness.

This weekend, MarbleRoad attended the National Kidney Foundation Serving the National Capital Area’s 22nd Annual Casino Night. The mission of the NKF Serving the National Capital Area (NKF/NCA) is to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The Foundation provides funding for medical research, patient and community services, professional and public education, and organ donation programs.

Stay tuned for World Kidney Day 2011 on March 10.

Rare Disease Publications Update

There has been some amazing activity recently in publications related to patient stories and pharmaceutical research and development:

** ORDR/GRDR CDEs: The Office of Rare Diseases Research (ORDR), within the National Institutes of Health (NIH), is seeking your input on the list of common data elements (CDEs) for patient data entry to be used in any rare disease registry in conjunction with the Global Rare Diseases Patient Registry (GRDR) being developed through the ORDR. CDEs are necessary to ensure that data are defined in the same way and use the same standards and vocabularies. The use of CDEs facilitates the standardization of data entry and allows for harmonization of sharing and exchange of information across registries, various analyses and studies.Your comments and suggestions are welcome. Please visit the following link to view the instructions on how to respond and the feedback form: http://bit.ly/fhsLhd. They welcome comments and suggestions through March 17, 2011.

** MarbleRoad board member Catherine Calhoun has published her story in a chapter in Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers. Proceeds from the book will support the Calhoun Bone Pain Project (her son Billy’s Bone Research Fund), along with several other charities of each author’s affiliation. Order your copy on Amazon.com today!

** Orphan Drugs in Development for Rare DiseasesPharmaceutical Research and Manufacturers of America (PhRMA) has released a new report that details 460 new medicines in clinical trials or under FDA review for Rare Diseases. As you know, special challenges are faced by those who fight against rare diseases. For example, it can be difficult to find enough patients for clinical trials and enough medical experts to both conduct clinical trials and sit on review boards. Balancing access to a medicine against safety issues can be particularly difficult when a rare disease, left untreated, has devastating or fatal consequences. Biopharmaceutical research is entering an exciting new era with a growing understanding of the genome. Scientific advances have given researchers new tools to explore more rare diseases, which are often more complex than common diseases.

Today, more than 2,900 new medicines are in development in the United States. Many of these potential new medicines will fail in clinical trials, but some may represent tomorrow’s new treatments. Bringing each new medicine to patients will require, on average, 10 to 15 years of testing and review. PhRMA publishes several reports that track the biopharmaceutical research pipeline for many diseases, including the leading causes of death among Americans—heart disease, cancer, and stroke.

** The Road to Diagnosis: Stories from Patients with Rare Diseases — In advance of Rare Disease Day, Inspire released Stories from 30 members of online communities on Inspire, http://bit.ly/g6iPZq (click link to download pdf).

“Today we have new tools, new technologies to help doctors find information about rare diseases, and to help families find medical care. Nonetheless, it is still hard, as you will see in the poignant stories that are shared below. And most of all, it is critically important to get all the families together. Just as there are support groups for the more common diseases in your local hospital, the people affected by rare diseases need each other at least as much, but it’s not so easy to call a meeting. People with rare diseases are thinly scattered across the United States, and across the world. They are kept apart by well-meant privacy rules, by geography, by country boundaries, and by language. Instead of meeting in the hospital library, we meet in online support groups, like the ones hosted at Inspire. We listen to each other’s stories, gain insights from others’ experiences, share the names of helpful doctors, diagnostic tests, and treatments. We bring each other hope.” — Joyce Graff, founder and Executive Director of the VHL Family Alliance, http://vhl.org).

Remarks by Howard Liebers at 2011 Serve DC Life After AmeriCorps Conference

•February 18, 2011 • 3 Comments

To download a .pdf of this speech click here.

I am humbled to be here today. Thank you for inviting me to be a part of Serve DC’s “Life After AmeriCorps” Conference. In particular I would like to thank Mayor Gray, Patricia Evans, and the staff here at the Mayor’s Office on Volunteerism – specifically Sarah Watkins for putting up with all of my peculiar questions and comments during the planning phase. Now, you all already have two strikes against you – one for making a policy person speak before 10am and one for holding your conference on a rare 70 degree February day.

I understand that this event is about your life after service, and so I am glad that I don’t need to speak at length about the importance of service in moving this country and its communities forward. You all already understand how important service is, and have chosen to serve here in DC. However, not everyone understands the role of a service program like AmeriCorps. Just last week the House Appropriations Committee, in keeping with the new House majority’s campaign promises to trim $100 billion from the Federal budget, recommended eliminating the Corporation for National and Community Service and AmeriCorps State and National. This development reflects what might be the single most important thing you can do in your own “Life After AmeriCorps”: you need to be a loud voice, sharing your stories, carrying forth the service message, and promoting the positive impact the AmeriCorps program has had on your life and on the communities that you have served. When you complete your term of service this year, you join the ranks of more than 637,000 AmeriCorps Alums – change agents who have dedicated nearly 775 million hours of service, and who mobilized almost 2.5 million community volunteers in 2008 alone. To cut Federal support for AmeriCorps would be a devastating blow to America’s poorest and most at-risk communities. AmeriCorps is a critical thread in our national fabric, and its presence is even more critical in challenging economic times.  As AmeriCorps Alums, we’re all compelled to ensure that others will have the same opportunities to serve, and to benefit from service, as we did. This responsibility is particularly timely now, but it’s forever important to share your story with others.

Like you, I served in AmeriCorps. I completed two terms of service with the Community HealthCorps program of the National Association of Community Health Centers; and later I went on to work as Senior Program Officer for Policy and Innovation at Community HealthCorps.  In that time I have participated on leadership teams at AmeriCorps Alums, marched with AmeriCorps Alums in President Obama’s inauguration parade, and had an opportunity to meet the CEO for the Corporation for National and Community Service. All of us here today are connected by the spirit of service, of volunteerism, and the efforts we make towards achieving equity through social justice causes like education or health care. But I what I want to do today is encourage you to never lose the spirit that first set you on this path… Your “Life After AmeriCorps” can and should continue to be a lifetime of service, whether you choose a career in public service or simply volunteer as time permits.

In that vein, I want to share with you four things I learned along the way; by no means revolutionary, but basic concepts that will help you to achieve success down the road – those are to “Find Inspiration”, “Do What You Love”, “Ask for Help” and “Be an Advocate”.

“FIND INSPIRATION”

Service demands the best of us, but we all know that sometimes our labor demands so much of us that it can be hard for us to find the best in ourselves. It doesn’t matter if we are in healthcare, education, environmental restoration, etc; we all need to be conscious of finding and remembering what motivates us to achieve and to contribute to the common good. Let me share with you some of the sources for my own inspiration.

It has now been nearly a century since Theodore Roosevelt first called for health care reform. Ever since, nearly every President and Congress, whether Democrat or Republican, has attempted to meet this challenge in some way. Early in the 20th century, industrial America faced the problem of sickness: when working people missed work because they were sick, they also lost their wages. This loss of income, even more than the cost of medical care, made sickness a major cause of poverty. In 1915, progressive reformers proposed a system of compulsory health insurance to protect workers against both wage loss and medical costs during sickness.  Later, the outpouring of civil rights activity in the early 1960s spurred politicians to support Medicare as a part of Johnson’s War on Poverty, and major civil rights groups all endorsed the legislation. Even after Medicare became part of the Social Security Act in 1965, support for more comprehensive health reform continued. In the 1970s the National Council of Senior Citizens and other groups joined the labor-led Committee for National Health Insurance (CNHI) and worked hard for the passage of a plan co-sponsored by Senator Ted Kennedy. Finally, last year, President Obama signed into law the Patient Protection and Affordable Care Act which expands access for affordable insurance options for people who need it and puts patients back in the center of the health care system.

The late Senator Ted Kennedy has left behind a legacy in both national service and health care that reminds me that I can always do more. AmeriCorps re-authorization in 2009, the Edward M Kennedy Serve America Act, was the largest expansion of national service programs in decades; and created the Healthy Futures Corps, supporting programs that identify and respond to unmet health needs within communities through a variety of activities.  Senator Ted Kennedy also authored the CLASS Act in the new health law, which stands for the Community Living Assistance Services and Supports program. It creates for the first time, a long term care insurance plan to help people pay for necessary care at home or in their communities. Before that, Ted Kennedy was a leader in the community health center movement. In a Newsweek article, Kennedy shared the following,

“In 1966, I visited the Columbia Point Neighborhood Health Center in Boston; it was a pilot project providing health services to low-income families in the two-floor office of an apartment building. I saw mothers in rocking chairs, tending their children in a warm and welcoming setting. They told me this was the first time they could get basic care without spending hours on public transportation and in hospital [emergency] rooms. I authored legislation, which passed a few months later, establishing the network of community health centers that are all around America today.”

Today, more than 1,200 Community Health Centers serve over 20 million people each year around the country.

I have been inspired by many of the leaders involved in civil rights movements, national service movements, and the health center and health reform movements. I can remember how I felt, exhilarated, as I sat in the House gallery on March 21, 2010 when health reform was passed – in fact, I ended up being quoted in a French newspaper which expressed that “Howard was unable to hide his joy.” I knew I was in the right career. I was inspired. I only hope to leave behind a legacy that improves upon the successes of those who have come before me and carves a path for future leaders. That includes sharing stories about why service and community health programs are so important with anyone who will listen.

“DO WHAT YOU LOVE”

Have any of you had a job that you absolutely hated? Show of hands… How hard was it to get out of bed in the morning? In tough economic times it can be easy to settle into a job just because it’s something that pays the bills.

When you wake up in morning, another day begins. Everyone goes through this same process. The alarm goes off, you get yourself out of the bed, and you get yourself out into the world. At times I have actually had to set 3 or 4 alarms, you know, the CD player on the nightstand, the cell phone, the coffeepot, etc. This is how our lives go by, and the only difference is that some people open their eyes with a smile and some people open their eyes dreading life. Unfortunately, not everyone gets to do the things that they love and it is no surprise that a lot of these people cannot wait for weekends to come. How many of you saw Facebook statuses this morning, or posted yourself, HELLO WEEKEND, I’VE MISSED YOU?!

I was fortunate to have the opportunity to become an AmeriCorps member in a program at a community health center. I used my two education awards to complete my Master of Public Health degree at New York Medical College, and have built a career around both health care and national service. Today, I am Director of Policy for the DC Primary Care Association (DCPCA), whose mission is Action and Innovation for Health Equity. For the last several years DCPCA has been operating a Community HealthCorps AmeriCorps program of its own, placing members throughout the District’s historic, safety-net, community-based primary care providers. Today, DCPCA is a leader in the implementation of health system reform, from its role in helping the District achieve an insurance coverage rate of nearly 94% of its residents, to its role as the Regional Extension Center in bringing 1,000 priority primary care providers to meaningful use of Electronic Health Records, to its role as operator of the DC Regional Health Information Organization or Health Information Exchange.

No matter how hard we fight for change, there will always be a handful of people who slip through the cracks. There are people who health reform will reach eventually, but whose medical conditions and quality of life do not offer them the luxury of time to wait. And so I decided to do even more work than just my day job in policy and system reform.

In 2009 I started blogging about rare or “orphan” diseases, which affect more than 30 million Americans, or 1 in 10. Today, the MarbleRoad blog has welcomed nearly 15,000 views.  I incorporated MarbleRoad as non-profit in the District of Columbia to offer financial assistance for people with rare diseases or for community health center patients in need of specialty care services not offered by their primary care providers. Developing and growing MarbleRoad has been one of the most exciting things I have ever done.

At the touch of love, everyone becomes a poet, and poetry has the power to truly move people. If you are doing the things that you love, work doesn’t feel like work and others will be moved to join your cause. How many of you became AmeriCorps members because somebody else told you how amazing of an experience it is?! Do whatever it is that you do because you love it, not just because you have to do it.

“ASK FOR HELP”

Service oriented people are used to getting things done, getting their hands dirty, and directly making change. We don’t always ask for help along the way… some of us work better independently, some don’t want to inconvenience others, some are simply too proud, or don’t know how to ask or who to ask. As I look around this room here this morning, I see hundreds of volunteers. However, according to a release from the Bureau of Labor Statistics last month, nearly 75% of the US population did not volunteer in 2010. A large number of people don’t volunteer simply because they weren’t asked to get involved. People want to get engaged; and if we work together and get more people involved we can have a bigger impact.

As I was developing the concept for MarbleRoad, and thought about incorporating as a business, I realized I couldn’t go it alone. I had to ask people to step up as my Board of Directors, I had to ask artists to share their work inspired by health experiences to help raise money, and I had to ask the community to donate funds to support us a non-profit. And people came through for me. They helped, they donated, and they spread the word.

And financial assistance from MarbleRoad to patients in need will not just be a handout. We are including a volunteer requirement as a part of the eligibility for assistance. Naturally, if somebody is too sick to volunteer, a family member or loved one can volunteer on their behalf – and many already do, as caregivers. Being the caregiver of a loved one can be difficult for many reasons. Nevertheless, it is a responsibility that many Americans have. According to the Family Caregiver Alliance, “An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and people with disabilities who live in the community.” By having volunteerism as a requirement for financial assistance, the financial assistance supports patients in need, leverages additional community impact, and highlights the role of caregivers, of volunteers, of service.

The work that we do can feel like running a marathon and we need to learn to pace ourselves… something I’ve never really been very good at myself. There’s so much work to be done, that we try to do anything and everything. But we should be looking for help long before things deteriorate so far that the options are limited and expensive. You need to ask for help, if you are truly invested in the work you are doing, and want to make a long-term commitment without killing yourself. Most people don’t turn to somebody for help until things are crashing down around them.

Never be afraid to ask others to help along the way – YOU can use the help, and WE are waiting to be called to action.

“BE AN ADVOCATE”

Believe me, I am the first to know that you are prohibited from certain activities as an AmeriCorps member… But in your own time, without organizational affiliation, or after service, as an AmeriCorps Alum, you can and should be an advocate. We in the health care and service fields have a dual responsibility to be passionate not only about our jobs and the people we serve, but also to ensure that the programs that improve our communities receive the highest funding levels possible. It requires some extra effort, but absent that effort, we are less likely to see increases for programs of critical importance, and more likely to sustain cuts.

I talked earlier about the proposed budget cuts to the AmeriCorps program. But the House did not propose cuts to AmeriCorps alone; their Continuing Resolution also cuts $1.3 billion to community health centers and cuts over $79 million in Federal support for the District of Columbia. We cannot balance our budget on the backs of the poor and disenfranchised. The AmeriCorps program is a tool for job creation, giving people experience and providing them with opportunities to further their education, all while driving positive change in our most vulnerable communities. Community health centers provide care to the uninsured and underinsured, regardless of their patients ability to pay. Without Federal support, more than 11 million patients will lose their medical home. Furthermore, the District of Columbia has one of the highest concentrated rates of poverty in the Nation:

  • One out of every three DC residents lives at or below the Federal poverty line.
  • Three out of every ten children in the District were living in poverty last year
  • Among African-American children in the District, childhood poverty was up to 43 percent

Again, as an AmeriCorps member, you all well know that you may not engage in political activity – but as AmeriCorps Alums you should rise and take action to protect opportunities for change. I encourage all of you to become advocates in your “Life After AmeriCorps”, not just on behalf of the AmeriCorps program itself, or on behalf of causes that are dear to you, such as education or health care, but on behalf of those who have no voice and who government has a responsibility to support.

In your “Life After AmeriCorps” find inspiration, choose a career that allows you to do the things that you love, ask for help along the way, and always be an advocate.

Thank you for the opportunity to be here today, I welcome any questions you may have.