Standing Up For You! – 2017

April

  • Met with Congressman Brian Mast in his district office in Stuart, Florida to discuss health care reform, the repeal and replace efforts and urging him to join with other members of congress to repeal the Independent Patient Advisory Board.

  • Attended a briefing at the National Press Club titled, “Risking Safety at All Costs: How Prescription Drug Importation Is Dangerous Policy.”
  • Attended a briefing titled, “The Potential Impact on Cancer Patients of a Repeal or Revision of the Affordable Care.”
  • Invited to attend a reception with the generic drug association, now called the Association for Accessible Medicines.
  • Attended the 2nd Annual National Policy & Advocacy Summit on Biologics and Biosimilars.
  • Participated as a presenter on the Protect Medicare Part D Working Group conference call.
  • Attended a briefing titled. “Coverage in an Evolving Market: The Future of Health Insurance.”
  • Attended the American Cancer Society – Cancer Action Network National Forum on the Future of Health Care.
  • Participated in a conference call on the repeal of the Independent Patient Advisory Board (IPAB).
  • Met with Representative Markwayne Mullin’s office (OK-02) to discuss HR-1920, a bill that would restore correct payments to community oncologists.
  • Met with Representative Leonard Lance’s office (NJ-07) to discuss HR-1920, a bill that would restore correct payments to community oncologists.
  • Attended a briefing titled, “The Future of Prescription Drugs: Assessing Value.”
  • Met with Representative Richard Hudson’s office (NC-08) to discuss HR-1920, a bill that would restore correct payments to community oncologists.
  • Attended a meeting on a new study on the cost of cancer care.
  • Delivered a talk to the Grange fly-in participants on the basics of health care and the state of the repeal and replace effort.
  • Participated in the monthly Patient Access to Community Treatment (PACT) Coalition meeting.
  • Participated in a webinar titled, “Drug Pricing: Where's the Future Headed?”
  • Met with Representative Peter Roskam’s office (IL-06) to discuss HR-1920, a bill that would restore correct payments to community oncologists.
  • Met with Representative Diane Black’s office (TN-06) to discuss HR-1920, a bill that would restore correct payments to community oncologists.
  • Attended a briefing in the Dirksen Senate office building titled, “The State of Biosimilars Policy.”

March

  • Participated in a webinar to discuss the repeal of the Independent Patient Advisory Board (IPAB).
  • Attended a briefing titled, “Employer-based Health Insurance and What It Means to You.”
  • Attended the Patient Access to Community Treatment (PACT) Coalition 2017 Planning Meeting.
  • Attended a briefing titled, “Safety and the Supply Chain: Ensuring Prescription Medicines are Safe for Patients.”
  • Participated in a rapid response webinar titled, “Repealing and Replacing Obamacare.”
  • Attended a briefing in the Cannon House office building titled, “What Does the Independent Payment Advisory Board Mean to Medicare Beneficiaries?”
  • Met with Representative Raul Ruiz’s office (CA-36) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Met with Representative Scott Peter’s office (CA-52) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Attended a briefing at the CATO center titled, “Can Health Insurance Innovations Reduce Prices and Drive Cost-Effective Care?”
  • Participated in two conference calls throughout the month concerning the preservation of Medicare Part D in the states.

February

  • Attended a meeting of advocacy organizations concerning Medicare Part D.Met with Senator Cassidy’s office (Senior Senator from Louisiana) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Met with the Regulatory Education and Action for Patients (REAP) coalition to discuss the reduction of regulations in health care.
  • Met with the America’s Health Insurance Plans (AHIP), the trade association for the health insurance industry, to discuss the issues that will affect older Americans in 2017.
  • Attended a briefing at the Brookings Institute titled, “What worked and what didn’t in Obamacare insurance markets.”
  • Attended the Community Oncology Association’s State of the Union briefing.
  • Attended the Medicare Access for Patients Rx (MAPRx) coalition meeting to discuss preserving and improving Medicare Part D.Participated in a Webinar to discuss counterfeit drugs.
  • Met with Representative Buddy Carter’s office (GA-01) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Conference call to discuss how to get Congress to repeal and disband the Independent Patient Advisory Board (IPAB).
  • Met with Senator Todd Young’s office (Junior Senator from Indiana) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Attended a briefing to titled “Medicare Part B:  Access to Medicines for Patients with Complex Conditions.”
  • Attended a briefing to discuss the ACA Market Stabilization Proposed Rule.
  • Participated in a workshop on understanding the strengths and limitations of value assessment frameworks presented by the Tufts Medical Center.
  • Attended a briefing titled, “The Value of a Cure: Ensuring Access and Encouraging Innovation.”
  • Participated in a meeting to discuss biosimilars and the impact of mid-year formulary changes.
  • Participated in three conference calls throughout the month concerning the preservation of Medicare Part D in the states.

January

  • Met with the coalition on safe medicine to discuss FDA proposals.
  • Attended the Garden State Inauguration Gala.

   

 

 

Invited to watch the inauguration parade.

 

  • Met with Representative Ryan Costello’s office (PA-06) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.
  • Attended a presentation by Newt Gingrich at the Heritage Foundation titled “Trump and Trumpism.”
  • Participated in two conference calls concerning the preservation of Medicare Part D in the states.
  • Attended a briefing on biosimilars, access and safety.
  • Met with Representative Tim Walberg (MI-07) to discuss the 340b program and ways to stop the closing of community oncologist’s practices.

Standing Up For You! – 2016

December

  • 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.

November

  • 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.

October

  • 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.”

September

  • 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.

50plus_expo

  • 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.

August

  • 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.

floridaaging_seminar

  • 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.

July

  • 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

June

  • 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.

May

  • 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.

booth 3 small

  • 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.

April

  • 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).

March

  • 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).

February

  • 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).

January

  • 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.

Standing Up For You! – 2015

December

  • Participated in a national tele-townhall meeting on Medicare.
  • Signed a letter to Secretary of Health and Human Services Burwell commenting on the Notice of Benefit and Payment Parameters for the 2017 Proposed Rule. Included suggestions for changes that would benefit seniors.

November

  • Held a luncheon for potential RetireSafe activists in the Harrisburg, Pennsylvania area.
  • Submitted a letter on Certificate of Public Need to the Virginia legislature.

October

  • Participated in the stake holders meeting at FDA concerning the re-authorization of the Prescription Drug User Fee Act.
  • Attended a two day discussion on drug innovation at the Pfizer research facility in Cambridge, MA.
  • Invited to and attended the National Consumers League Trumpeter Awards Dinner.
  • Invited to and attended a two day advocacy summit on healthcare and how best to advocate for change.
  • Attended meeting with biologic experts to discuss the impacts of biologics and biosimilars on healthcare.

September

  • Attended and conducted a seminar at the 50+ expo in York, PA.
  • Attended a full Senate Finance committee hearing on the financial situation in Puerto Rico and its possible impact on bonds that are held by many older Americans and retirement funds.
  • Invited to attend and comment at the public meeting on the re-authorization of manufacturer funds for expediting the evaluation and authorization of new drugs.
  • Attended a briefing at the Senate Russell office building titled, “Prescription Drug Costs: Trends and Tradeoffs in the Pipeline from Lab to Market”
  • Visited Senator Grahams (SC) office to discuss the preservation of access and benefits of Medicare Part D.
  • Attended a hearing called by the Senate HELP committee to get a progress report on biosimilar implementation (click here for more information on that hearing)
  • Attended a special presentation at Intel’s Washington office titled, “Big Data, Genome Sequencing & the Future of Personalized Medicine”
  • Visited the House offices of Congressman Tiberi (R-OH 12th District) and Congressman Young (R-IN 9th District) to discuss the support of maintaining the present FICA rule for restaurants and servers.
  • Attended a Hill briefing on the House side concerning the loss of Community based oncology practices (click herefor more information).

August

  • CPI for Seniors bill that was championed by RetireSafe was re-introduced in the House by Congressman John “Jimmy” Duncan (R-TN-2).  The bill, HR 3074, would instruct the Bureau of Labor Statistics to calculate an accurate Consumer Price Index (CPI) for seniors such that the Cost of Living Adjustment (COLA) for Social Security payments would more accurately reflect the actual orice increases experienced by older Americans.  See the actual bill here.
  • Participated in a seminar, sponsored by RetireSafe, at the Florida Council on Aging Conference in Orlando, Florida.  The seminar was a debate on possible solutions to current issues that affect older Americans.

July

  • Met with staff of Representative Joe Pitts and Representative Ben Lujan concerning simplifying and expanding the Medicare Part D appeals process.
  • Attended a briefing detailing the Part D Beneficiary Appeals Fairness Act.
  • Participated in conference call discussing the implications of the King v. Burwell ruling and what’s next for patient advocates.
  • Attended a one day meeting at FDA concerning PDUFA VI, the funding mechanism for expediting the approval of new innovative cures.
  • Participated in a conference to discuss patent legislation and its implications on research and patients.

June

  • Attended the BIO international conference in Philadelphia.
  • Met with the staff of Senator Burr (R – NC), Senator Collins (R – ME), Senator Cassidy (R – LA) and the Senate HELP (Health, Education, Labor and Pensions) Committee FDA Policy Advisor, encouraging them to hold a hearing concerning the FDA’s lack of regulations and guidelines concerning biosimilars.
  • Wrote a letter to Inova Fair Oaks CEO, John Fitzgerald, in response to his commentary in the Fairfax Times in support of Virginia’s COPN law, which has left the state’s patients with an inadequate health care system. RetireSafe further emphasized that Virginia’s outdated COPN law threatens access to high-quality and affordable healthcare for everyone in the state, and that leaders in the Virginia General Assembly must work to reform the law.  (Read RetireSafe’s letter here)
  • RetireSafe workers collected petitions to encourage Virginia law makers to reform the outdated and competition restricting Certificate of Public Need law in their state.

May

  • Attended ASCO (American Society of Clinical Oncology) Conference in Chicago.  Attended seminars focused on future payment models and the closing of community oncology clinics.
  • Met with two different groups to discuss the 21st Century Cures legislation that is coming out of subcommittee.
  • Visited with the staff of Senator Isakson (R, GA), Senator Casey (D, PA) and Senator Nelson (D, FL) to discuss FICA tax issue.

April

  • Reviewed a program that eliminates the need to call in multiple prescription refills, reduces the number of trips to the pharmacy and provides an opportunity for patients to meet one-on-one with their pharmacist on a monthly basis to discuss their medications.  Click here to see a video on this new program. Click here to find out more details about this great program.
  • Attended the fourth annual National Forum on the Future of Health Care organized by the American Cancer Society Cancer Action Network (ACS CAN).
  • Met with staff of Senator Thune (R, SD) and Senator Coats (R, IN) to discuss Medicare rebates and proposed cuts to Medicare Advantage.

March

  • Attended a hearing called by the Energy & Commerce Health Subcommittee concerning drug discounts given to qualified entities in support of indigent and patients without insurance (340B).
  • Sent this letter signed by 20 organizations to the Centers for Medicare & Medicaid Services (CMS) concerning cuts to Medicare Advantage proposed by CMS.
  • Met with Sean Cavanaugh Deputy Administrator and Director of the Center for Medicare at the Centers for Medicare & Medicaid Services (CMS) and Jefferey Kelman Chief Medical Officer at CMS to discuss continued access to pain medication while discouraging its use by addicts.
  • Met with the following House Member’s staff to discuss preserving Medicare Part D, Representative Lance, Jenkins, Meehan and Collins.
  • Began a project to Preserve Medicare Advantage.  Our first step is to fight CMS on their proposed cuts to Medicare Advantage. (see comments on our Feedback panel on the right side of the web page).
  • Met with Representative Sarbanes and Representative Cardenas staff about 340B and 21st Century Cures. (Representative Cardenas received our Standing Up For America’s Seniors Leadershipaward, see it here).

February

  • Met with the staff director of the Senate Committee on Aging to discuss prompt pay legislation which encourages the maintenance of community based services.
  • Conference call with Congressman Steve Scalise, the House Majority Whip, on the status of the Department of Homeland Security funding and the questions on dealing with immigration.
  • Met with Chairman Upton’s staff on the Energy and Commerce Committee concerning the closing of community oncology practices and their new legislation, 21st Century Cures.
  • Met with health and senior advocates concerning cuts to Medicare Advantage and the impact on older Americans.
  • Met with concerned activists led by the Arthritis Foundation on how to preserve effective communication between the patient, the pharmacist and the doctor when dispensing medication, especially biologics and biosimilars.
  • Presented our “Standing Up for America’s SeniorsLeadership Award” to Senator Cory Gardner (see Senator Gardner’s award here).

January

  • Met with Kim Corbin, Health Counsel for Senator Debbie Stabenow to review Medicare issues.
  • Attended a meet and greet with the House’s youngest member, newly elected Elise Stefanik.
  • Met with Senator Gardner’s and Senator Cassidy’s staff concerning the Prompt Payment legislation.  This legislation that will help retain community access for healthcare. (See Legislationhere)
  • Testified at the FDA’s advisory board hearing concerning an application to manufacture a biosimilar for the drugNEUPOGEN. (See statementhere).