Standing Up For You! – 2016


  • Attended the Lilly Advocacy: Dialogues on Discovery.
  • Attended the Partnership to Improve Patient Care symposium on, “Patient Voices, Patient Value: Developing Patient-Centered Solutions.”
  • Participated in the National Patient Advocate Foundation Fall Policy Consortium.


  • Attended the CAN Voices of Caregivers Award and Reception.
  • Participated in the National Patient Advocate Foundation Fall Policy Consortium.
  • Attended the two-day BIO Patient and Health Advocacy Summit.
  • Met with advocates to discuss how to fight a ballot initiative in California that is going to impact drug pricing.
  • Joined in a tele-town hall meeting to discuss the impending activation of the Independent Payment Advisory Board.


  • Participated with the Community Oncology Alliance (COA) in a discussion regarding the potential interruption of access to needed oral medications to patients with cancer, stemming from recent actions by Pharmacy Benefit Managers (PBMs) and CVS Caremark, in particular, to restrict network access.
  • Attended the funding meeting at the FDA concerning industry funding for 2017.
  • Worked with the Patient Access to Community Treatment Coalition to decide on the best path forward.
  • Attended a briefing on Capitol Hill titled, “How Would Americans Fix Social Security” co-hosted by the Committee for a Responsible Federal Budget.”
  • Invited and attended the 30th Anniversary of the National Coalition for Cancer Survivorship reception.
  • Participated in a briefing with John Stone, Counsel to the House Energy and Commerce Committee’s Subcommittee on Health.
  • Attended a briefing on FDA’s Process for Expanded Access.
  • Met with a group of organizations that are interested in stopping the launch of the dreaded Independent Payment Advisory Board which may begin this year.
  • Participated in a health equity summit focus group, titled “Building Health Equity Solutions Through Partnerships.”


  • Attended a briefing on National Health Security.
  • Reviewed a webinar titled, “How similar molecules may mean similar cost-sharing for patients.”  Helped further our knowledge on Biosimilars and how they will impact health care.
  • Sponsored a booth and presented a Seminar on “What’s Happening in Washington” at the York, Pennsylvania Senior Fair.


  • Attended a briefing on the Medicare’s proposed 2018 Notice of Benefit and Payment Parameters.  This notice is the first look at any changes to how Medicare will pay for services.
  • Attended a briefing on how minority and underserved communities are disproportionately affected by chronic illnesses.


  • Met with the AIR 340B coalition team.
  • Joint phone call with the Medicare Advantage Coordinated Care task force.
  • Sponsored a seminar at the Florida Council on Aging Conference titled “InsideWashington” which featured two different approaches to the issues that are important to older Americans.  This was a back-and-forth between myself and a moderate Democrat.


  • Attended a breakfast meeting where David Kendall, Senior Fellow for Health and Fiscal Policy at Third Way, spoke on their approach to health care reform.


  • Attended the Patients for Biologics Safety and Access coalition meeting to discuss next steps following the FDA testimony.
  • Attended a meeting to discuss the Prescription Drug User Fee Act (PDUFA) VI Goals for fiscal years 2018 through 2022. PDUFA is intended to supplement congressional appropriations so the U.S. Food and Drug Administration (FDA) can hire staff, improve systems and enhance the human drug review process to make important therapies available to patients quickly and safely.
  • Attended the MapRx meeting to review the Part D payment change impacts.
  • Testified at two FDA advisory Committee meetings on July 12th and 13th concerning the lack of guidance on biosimilars and the lack of infomrative and critical label information.  You can read the RetireSafe testimony here.
  • Attended a meeting with a group of concerned organizations to discuss a coordinated reaction to the dangerous CMS  Part B demonstration project


  • Attended a Senate Finance Committee hearing (see entire hearing here) titled, “Examining the Proposed Medicare Part B Drug Demonstration” Chaired by Senator Hatch.  The hearing exposed the problems with the proposed Part B demonstration project.
  • Attended a briefing titled, “Pathways to Prevention: A Policy Discussion on Research & Treatments for Alzheimer’s”.
  • Attended the Biotechnology Innovation Organization (BIO) conference in San Francisco.  This conference brings together over 15,000 Biotechnology professionals.  RetireSafe focused on the public policy aspects and met with numerous organizations to discuss the safety, access and cost of medicines for older Americans.
  • Attended the American Society of Clinical Oncology (ASCO) in Chicago.  This conference brings together over 30,000 oncology professionals to discuss new approaches to discovering cures, operation and public policy.
  • Met with 100’s of seniors at the 50+ expo in Exton, PA.  Gathered more surveys on who they supported for President and the importance of vaccines.
  • Met with 100’s of seniors at the 50+ expo in Hershey, PA.  Gave a seminar on the impact of proposed legislation on older Americans.  Had one-on-one discussions concerning vaccines and public policy.


  • Released infographic (click here) on the proposed payment cut for Medicare Part B.
  • Met with 100’s of seniors at the 50+ expo in Lancaster, PA.  Talked about our survey on who they supported for President and about the  importance of vaccines.

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  • Conferenced with other organizations on state legislative initiatives affecting mature Americans.
  • Sat at the main table and participated in the 340B summit discussing how best to support the uninsured and vulnerable patients that rely on the 340B program.
  • Attended a seminar titled, “Affordable Medicines: Impact of Federal Policy on Innovation, Competition, and Costs”
  • Participated in a round table discussion concerning the CMS proposed payment cut for Part B drugs.


  • Attended a briefing on Value Driven Health Care Systems.
  • Met with fellow advocates to discuss the CMS Part B payment proposal and its impact on patients.
  • Made lobbying calls so far this month to personal in the following congressional offices to discuss the importance of preserving the benefits of Medicare and especially Medicare Part D – Representative Mark Meadows (R-NC) and Representative Ron DeSantis (R-FL).
  • Made lobbying calls so far this month to personal in the following congressional offices to discuss CMS’ proposed changes to Part B payments and the negative impact it would have on older adults – Senator Debbie Stabenow (D -MI).


  • Attended a Rx 4 Us meeting with special guest Rachel Pryor, Minority Policy Advisor for the House Energy and Commerce Health Subcommittee.
  • Sat on the MACC Task Force panel for a congressional briefing, educating more than 60 congressional staffers and 3rd party organizations on recent poll data regarding the proposed Medicare Advantage cuts by the CMS (Centers for Medicare & Medicaid Services).  Click HERE to see the full article and video of the panel.
  • Attended a briefing in the Senate office building titled, “The Escalating Costs of Health Coverage:  Causes, Impacts, and Options”
  • Made lobbying calls throughout the month to personal in the following offices to discuss the importance of preserving the benefits of Medicare and especially Medicare Part D – Senator Shelley Moore Capito (R-WV), Representative Dave Loebsack (D-IA), Representative Michael Turner (R-OH), Senator Dan Sullivan (R-AK), Representative. Gene Green (D-TX), Representative. Alex Mooney (R-VA) and Senator Christopher Coons (D-DE).


  • Attended a briefing on “Importation and Counterfeit Drugs:  Is the Threat Real?”
  • Attended a briefing at the capital on Caregivers of Adults with Mental Illness
  • Attended the stakeholders meeting at FDA to discuss the Prescription Drug User Fee Act (PDUFA.
  • Attended a MAPRx coalition meeting to discuss a study concerning raising the specialty tier threshold.  The study showed that raising the threshold from $600 to $800 would have a minimum affect on premium costs but would reduce the co-pays on drugs that would no longer be classified as specialty drugs and therefore save seniors money.
  • Attended a briefing, keynoted by House Energy & Commerce Committee Chairman Fred Upton (R-MI), titled “Replacing Obamacare with Consumer-Centered Health Reforms”.
  • Testified at the Food and Drug Administration (FDA) advisory board hearing as they considered the approval of the second biosimilar in the U.S. Cautioned the board that blanket approvals for untested uses of the biosimilar sets a dangerous precedent. (click here to read the entire testimony)
  • Attended a hearing entitled “Examining Implementation of the Biologics Price Competition and Innovation Act.” Testifying were Dr. Janet Woodcock, Director, Center for Drug Evaluation and Research, Food and Drug Administration and Mr. Sean Cavanaugh, Deputy Administrator and Director of the Center of Medicare, Centers for Medicare and Medicaid Services. (click here for details on the hearing).


  • Made lobbying calls on the offices of Congressman Burgess, Barton, Congresswoman Ellmers and Energy and Commerce Committee Counsel John Stone concerning the safety of biosimilars.
  • Participated in a conference call with Secretary of Health and Human Services, Sylvia M. Burwell and Senior Advisor to the President, Valerie Jarrett, to discuss the Affordable Care Act/Obamacare.
  • Participated with the MapRx Coalition to discuss the latest Medicare Part D formulary recommendations.
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