Precision Advocacy - Getting the Right Message, To the Right Person, At the Right Time

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As I was driving down 95 South to Philadelphia on my way to the American Association for Cancer Research’s Annual Meeting I chatted with fellow advocate Marie Recine about last year’s meeting in San Diego. This was Marie’s first time attending the AACR Scientist- Survivor Program (SSP) although she was no stranger to medical meetings since she is a medical writer and a breast cancer survivor. It was my second AACR meeting.  I was very excited to have the opportunity to participate in the Scientist-Survivor program once again.  

The mission of the AACR Scientist↔Survivor Program is to build bridges and unity among the leaders of the scientific, cancer survivor and patient advocacy communities worldwide. After last year’s meeting I made several new connections in the advocacy world, and decided to take steps to educate myself and become more actively involved in the world of research advocacy.  As an outcome of last year’s SSP I created a research advocate profile on the National Cancer Institute’s newly formed Office of Advocacy Relations (OAR) website http://www.cancer.gov/about-nci/organization/oar/become-advocate and subscribed to the OAR listserv. I also listened to OAR’s scheduled webinars/teleconferences and watched the series of educational videos that OAR produced on Research Advocacy.  I even submitted my application to be considered to be part of the NCI Council of Research Advocates (NCRA). Unfortunately I wasn’t selected this year, but I will apply again. I was selected to be a voting member of the University of Pennsylvania’s Institutional Review Board after inquiring about it at the Office of Regulatory Affairs.  I was inspired to do all this as a result of last year’s SSP program.

This year American Association for Cancer Research (AACR) launched a new campaign calling on those affected by cancer to share their definition of real hope - #RealHopeIs. http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/real-hope-is.aspx#.VX7Y3d7D_-c  As a multiple myeloma survivor real hope to me is the breakthroughs in cancer research that are allowing cancer survivors to live longer more productive lives. Many of the promising breakthroughs that I saw highlighted at this year’s AACR meeting involved immunotherapy and the evolution of precision medicine using Big Data and sophisticated genome sequencing techniques.  Researchers were enthusiastic and hopeful not discouraged and frustrated when they presented their findings. You could feel the positive energy in the room and the hallways buzzed with excitement. I heard the word cure mentioned more than ever in the past.  It is a very promising time for cancer research. If #RealHopeIs clinical trials that lead to cures. I left Philadelphia feeling hopeful.

Cindy’s  #RealHopeIs story  https://www.youtube.com/watch?v=aCaKVuuTuhk 

The only frustrations I heard at the AACR meeting revolved around lack of funding. Cancer research fuels progress. There is no doubt that cancer research is saving and improving millions of lives. According to the AACR Cancer Progress Report 2014 from August 1, 2013 to July 31, 2014 the Food and Drug Administration (FDA) approved 6 new anticancer therapies, 5 new uses for previously approved anticancer therapies, 2 new uses for imaging agents and 1 new use for a screening test. Through my attendance at medical meetings and in my readings I feel confident that even more significant ground-breaking discoveries are on the horizon.  It is disheartening to think cutting edge research is being dulled because of lack of funding.  This is a travesty. 

But the problem isn't just that a lack of investment in medical research. A lack of investment in the research can discourage young people from entering this field. The United States’ funding to the National Institute of Health (NIH) has not increased since 2012 (pre-sequester) and it has remained relatively stagnant for 11 years in a row. When we take into account the cost of biomedical inflation this becomes a very serious concern. In contrast other countries are increasing their budgets for research and development. America currently ranks 10th among OECD nations in overall research and development investments, behind countries such as Israel, Korea, Finland, Sweden and Germany. There was more research happening at the NIH in 2003 than today. If the United States wants to remain globally competitive it needs to increase its investment in research.

The AACR has urged Congress to “Prioritize the growth of the NIH and NCI budgets at a predictable, robust pace by providing annual budget increases at least comparable to the biomedical inflation rate.” Cancer is a very costly disease. According to the AACR’s Cancer Progress Report in 2009 the overall economic costs of cancer in the United States were $216.6 billion. Unless significant new advances in prevention, early detection and treatment are made the economic costs of cancer is predicted to be $458 billion in 2030. Investment in cancer research besides saving and improving lives for millions of people is essential and economically sound. 

While attending the Scientist-Survivor Program at AACR Annual Meeting I attended a special interest session entitled “The Importance of Medical Research Advocacy in the Fight Against Cancer”. The presentation was given by Mary Lee Watts MPH, RD AACR’s director of government relations, Aimee Franco PhD cancer researcher from the University of Arkansas for Medical Sciences, and James Ingram the senior manager from AACR’s Office of Science Policy and Government Affairs. This session gave me the tools I need to advocate for change. Ways I can make my voice heard.

Mary Lee Watts taught me how important it is to cultivate relationships on Capitol Hill. Aimee Franco said a once a year visit is not enough. Building relationships can be done in many ways.  The easiest way to get started is to sign up for action alerts from cancer advocacy organizations. These alerts will inform you on issues related to cancer research.  I used this link provided by James Ingram to register for AACR’s Cancer Action Alliance http://www.aacr.org/AdvocacyPolicy/GovernmentAffairs/Pages/aacr-cancer-action-alliance___9DB83D.aspx#.VX7oed7D_-c   Alliance members are kept regularly informed about the news and events that affect cancer research and are alerted to opportunities to contact Congress or participate in other forms of outreach. Alliance members receive action alerts, timely legislative updates and other resources to facilitate their efforts. Other organizations such as the Leukemia and Lymphoma Society, the International Myeloma Foundation and the American Society of Hematology have similar action alerts that I receive. 

Face to face meetings with your elected officials are another great way to make your voice heard.  These meeting can be held in-district or in Washington, DC.  I have had the opportunity to do both. The first in-district meeting I scheduled was several years ago.  I wanted my House representative to sign on as a co-sponsor of the federal oral parity legislation.  I previously sent emails as a response to the Action Alerts I was receiving from the International Myeloma Foundation (IMF), but my representative failed to sign on.  The advocacy director from the IMF researched out to me as asked if I would schedule an in-district meeting with him while he was in town for the summer.  I was hesitant. I didn’t think one voice could make a difference and this was something that was way beyond my comfort zone.  Emails were fine, but a face to face meeting was a totally different story. Somehow the advocacy director convinced me to schedule that appointment.  She prepared and coached me for my face to face encounter.  Although I was looking for an excuse to cancel the meeting I pushed myself to keep the scheduled appointment.  The discussion went well.  Everyone was polite and interested. A couple of weeks later after a few follow-up emails on my part my representative became a co-sponsor of the Oral Parity legislation.  I‘d like to think it had something to do with my meeting.

Recently I had the opportunity to travel to Washington, DC with the Leukemia and Lymphoma Society.  On Hill meetings were scheduled for us to speak with our elected officials.  In our meetings we held discussions about the 21st Century Cures legislation.  This is a meaty bill. Some key points revolve around NIH funding, patient voice in the clinical trial process and FDA reform. The meetings went well resulting in a few new co-sponsors. I left Washington feeling empowered. I encourage everyone to get involved.  Once you catch the bug you will see how rewarding this experience is and how important it is to share YOUR patient story. 

Amiee Franco reminded us during that special interest session on how important it is to use our social media networks to push out what we are supporting in regards to research advocacy and to ask others to back our efforts. I have always used Twitter as a source of my advocacy efforts (@MyelomaTeacher), but I plan to use my personal Facebook page and the Facebook pages I manage more effectively.  I also plan to revive the advocacy committee of the Philadelphia Multiple Myeloma Networking Group and enlightened the membership on the political issues cancer patients are facing and encourage them to make their voice heard too! 

Two upcoming events that I intend on participating in are the AACR Advocacy Webinar in July and the Rally for Medical Research in Washington, DC on September 16-17.  The Rally for Medical Research is call on our nation's policy makers to make funding for the National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in scientific research that ultimately leads to more progress, more hope and more lives saved. I hope to be there in person this year, but if I cannot make it I will support their efforts through my social media networks.  The Rally for Medical Research site has provided a Twitter guide and other resources. http://rallyformedicalresearch.org/pages/resources.aspx 

I have learned how important it is not to be silent. Legislators are interested in our stories.  Tell them, share experiences and hope. Develop a relationship with those who represent you on The Hill and inspire others to do the same.  Advocacy takes many forms.  Returning from last year’s meeting I focused my energies on research advocacy. This year I am pushing myself to become a better informed, more vocal political advocate.