American Society of Hematology

Testimonials From the ASH Advocacy Leadership Institute

A Day on Capitol Hill: The 2015 ASH Advocacy Leadership Institute

A group of 26 hematologists, both clinicians and scientists, walked the hallways of Congress led by Dr. Alan Lichtin on Thursday, October 29, 2015 advocating for National Institutes of Health (NIH) funding and oral chemotherapy parity. That same day, the 54th Speaker of the House was officially elected after 236 members of the full House of Representatives cast their supporting votes. A milestone day in the history of American politics and a milestone in the career of so many early-career hematologists.

We are grateful to ASH for selecting us to participate in the Advocacy Leadership Institute (ALI) and allowing us to witness first-hand history in the making. The ALI kicks off with an introduction from all the participants. Members of ALI come from all geographic areas of the country with diverse backgrounds and interests. ALI divided us in groups based on geographic region; our group represented the "west" as we work in Arizona, Oregon and Alaska, respectively. Shortly afterwards, we received multiple lectures about laws and policy-making by inspiring well-recognized thought leaders. The main topics we covered included advocacy, the legislative process, health policy, and avenues to remain engaged in the Society’s activities. The welcoming and interactive environment is collegial and low-stress, encouraging everyone to bring unique perspectives to the table. We were taught how to reach out to policy-makers and find resources in both our communities and at the national level. On Capitol Hill the next day, we visited the offices of senators and the representatives of our respective states, stepping forward into a unique position for positive impact with face-to-face time in front of the nation's policymakers. Members of ASH staff came with each of our groups to provide guidance, pointing us in the right direction and providing helpful feedback before and after our meetings regarding the best way to communicate and frame our message. As physicians we are at the receiving end of the lawmaking process and we are able to educate our lawmakers about the real world impact of policy decisions.

The practice of medicine is being increasingly regulated, and these additional layers of regulations are being set by administrators that are not clinicians or scientists. The next time you are frustrated because your patient’s insurance will not cover a necessary medication, remember that there are avenues available to articulate a message that can lead to a positive change. If you do not want to work under regulations that ignore your needs, speak up and think about developing your advocacy skills while being engaged in the future of medicine. The ALI training surpassed our expectations when it comes to interacting with policy makers in such a critical and ever-changing climate in the midst of budget caps, chemotherapy shortages, filibusters, vetoes, and government shutdowns. The reality is that medical school in general does not prepare you to understand cost of medications, policy, or advocacy. Healthcare policy seemed to be a complex subject that some hospital administrator deals with while we are busy in the clinic or in the lab. But once you examine healthcare policy under a microscope, you realize how fundamental physician participation is in tailoring the key rules that govern the fabric of medicine. We are witnessing the seismic change from slow incremental steps to fast paced action. This is a new world with President Barack Obama’s Precision Medicine Initiative and Vice-President Joe Biden's Moonshot to end cancer. We need to be part of it.

The truth is that we are all advocates in our daily practices. We advocate for our patients when we call their insurance company to ask that a previously denied PET scan be covered. We advocate for our patients when we find a clinical trial outside of our institutions because it is the best solution for the particular patient in front of us. Our advocacy was only local until now, impacting only a handful of patients in our local clinics, but together we have the potential to make a more significant change at a higher level. ALI will provide you a different vision and appreciation regarding the importance of being engaged and remaining present. The networking interactions at ALI will foster future collaboration and research opportunities among participants. Even after ALI is over, you will be invited to participate in ASH grassroots events at the ASH annual meeting and depending on your level of commitment many other opportunities may arise. ALI sets the stage for developing forward-looking initiatives in your career from continuing to offer state-of-the-art care to the patient in front of you domestically but also thinking globally. We strongly recommend ASH members to apply to ALI and drive improvements at a broader national level. Your patients need to be heard. And you are their voice. Take action and be a proud sponsor of ASH and your colleagues to spearhead change.

Disclaimer: The opinions expressed here are personal and not necessarily representative of the authors' institutions.

- Jessica Leonard, MD, Oregon Health and Science University, Portland, OR
- Javier Munoz, MD, MS, FACP, Banner MD Anderson Cancer Center, Gilbert, AZ
- Shannon Smiley, MD, Katmai Oncology, Anchorage, AK

If you have any questions about the ASH Advocacy Leadership Institute or the ASH Grassroots Network, please contact ASH Legislative Advocacy Manager Tracy Roades at troades@hematology.org.

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Manali Patel, MD, MPH

I am so grateful for having participated in the first ASH Advocacy Leadership Institute. The ALI educational and training activities helped me to appreciate and actively engage in advocacy for our patients and our research especially in our current political climate. With drug shortages, cuts to research funding, and the imminent changes in reimbursement, ASH's ALI was what helped me to understand that our voices need to be heard. It is truly because of the ALI that I have the skills and confidence to express my voice. Through the institute I learned that advocating for our patients is what truly drives changes on a population level and is the vehicle to improve value-based care for our patients and continue our research endeavors to improve health.

The ALI training and education invigorated me to pursue my passion for advocacy in a field of medicine that so desperately needs it! Since October, I have been back to Washington, DC twice, sent letters to my congressmen, and met with my community leaders to advocate for regulation of drug shortages, NIH funding, and stem-cell research. Because of the ALI, I have also become more active in ASH and am now a participant on some of ASH's standing subcommittees.

Perhaps the most surprising and welcoming aspect of the ALI was not only the milestone I reached to direct my future endeavors but also the life-long friendships I made as well as the collaborations with like-minded individuals on research and other advocacy projects. The ALI was truly one of the most influential experiences in my early career and I am grateful for ASH's dedication to this area. I give my thanks to ASH's commitment and dedication to helping practitioners understand and actively participate in advocacy. This is a skill that our traditional medical education does not teach and therefore, I thank you ASH and the ALI, for helping me to better understand and appreciate advocacy on an individual, community, and societal level.

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Naveen Pemmaraju, MD

I had the fortune of being nominated for, and accepted to attend the first ever ASH Advocacy Leadership Institute (ALI). I truly enjoyed the time I spent in Washington, DC with the ASH team for this program. Through the oustanding lectures, small group sessions, and meetings on Capitol Hill, I was able to get my first glimpse of the inner workings of the political process as it relates to physicians and medical issues, and why its so important that every physician try to develop at least a working level knowledge of the issues facing all of us in the field today. Because of my lifelong interest in healthcare policy, this program allowed me my first chance to particpate, explore, and begin to understand the complexities of the world of healthcare policy - and I am now hooked! This institute proved to be a fantastic opportunity for all of those who attended, especially in light of all the new and important policies being debated about healthcare reform, NIH research funding, and physician reimbursement. Through this first of its kind program, I was able to meet other hematologists with similar interests and network with other members of ASH from around the country. I thank ASH and the Advocacy Leadership Institute for this once in a lifetime experience and this positive experience has inspired me to stay active with ASH and healthcare policy for the rest of my career.

Additional thoughts:

  • One of the many things I learned at the ALI was to learn how to seek out and look for various resources in one's community and region available to help further healthcare policy awareness. Since completing the ALI, I have had the opportunity to reach out to leaders of my institution and find multiple venues for causes I am passionate about, such as adolescent and young adult (AYA) cancers. After being inspired by the ALI to look for different resources and networks in my community/region/state, I found and participated in an AYA conference focusing on cancer care issues, including hematologic maligancy patients, and am starting to get involved with this organization.
  • In addition, I care deeply about trainee education, as I feel that training the medical students/residents/fellows of today will lead to the development of tomorrow's leaders. Through my participation, I have been invited by ASH to be a part of a national test item writing workshop to ensure we continue to offer high quality exam questions for our nation's medical trainees.
  • Finally, I have been invited to particpate in ASH grassroots events, and in the ASH Scientific and Government Affairs Capitol Hill days, which I plan to attend in the coming year to build on my experience meeting with members of Capitol Hill from the first ALI. I also plan to reach out to local members of the House and Senate here at home to help connect political leaders to the "in the trenches" healthcare needs of patients, physicians, nurses, and other members of the healthcare team.
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