Advocacy
Danielle Doheny Director of Public Policy and Advocacy, International Myeloma Foundation
Advocacy at the IMF
Informing and influencing policymaking on the critical healthcare issues that directly impact myeloma patients.
Principles
Priorities Grassroots
Advocacy at the IMF
We believe in the value of working to improve healthcare policies to ensure there are no barriers to care as patients navigate their myeloma journey.
The IMF is the voice of the myeloma community in Washington, DC - informing and influencing critical policy decisions.
Our advocacy priorities are determined by the following three principles:
1. Ensure Equitable Access to Care
2. Eliminate Financial Barriers
3. Secure Research Funding
2024 U.S. Advocacy Priorities Snapshot
1. ENSURE ACCESS TO CARE
INSURANC E REFORM: DRUG ACCESS
2. ELIMINATE FINANCIAL BARRIERS
3. SECURE RESEARCH FUNDING Step Therapy Protocols Safe Step Act
H.R. 2630 / S. 652
INSURANC E REFORM: DRUG ACCESS PBM Reform PBM Reform Act
H.R. 5378 / S. 1339
MEDICARE REFORM:
PHYSICIAN ACCESS
Tele-Health/Medicine
Telehealth Modern. Act
H.R. 7623 / S. 2016
INSURANC E REFORM: COINSURANCE MEDICARE REFORM: ANNUAL COST LIMITS
Annual Appropriations
INSURANC E REFORM: COPAYS Copay Accumulators HELP Copays Act H.R. 830 / S. 1375 Oral Parity Cancer Drug Parity Act H.R. 6301 / S. 2039
FEDERAL FUNDING ANNUAL APPROPS Inflation Reduction Act implementation Cap & Smoothing (MPPP), Drug Pricing
NIH: National Cancer Institute, National Institute on Minority Health, ARPA-H
CDC: Comprehensive Cancer Control Initiative
DoD: Congressionally Directed Medical Research Program (CDMRP) for Myeloma.
CLINICAL TRIAL DIVERSITY
Focus on underserved, POC, rural settings and socioeconomically disadvantaged groups
Role of Grassroots Advocacy
Grassroots Advocacy is the critical component to influencing policy decisions
The IMF brings advocates to Capitol Hill to share their experience with lawmakers.
Together, we champion legislative priorities that directly impact the lives of millions of patients and elevate the voices of of the myeloma community.
The IMF Grassroots Advocacy Program is multi-faceted and growing
• Advocacy Training & Leadership Development
• Policy and Legislative Education
• Grassroots Campaign Planning
• Health Policy Forums & Roundtables
• Advocacy Resource Development
• Storytelling and Personal Narratives
Medicare Changes Detailed | A Phased Approach
No copays for vaccines under Part D
Insulin copays limited to $35/month
Expanded Eligibility for the Federal Extra Help Program (Low-Income Subsidy Program) to help pay premiums, deductibles, coinsurance, etc.
$3,250 annual cap (approx.) on out-of-pocket spending for prescription drugs under Part D (eliminating 5% coinsurance in catastrophic phase)
$2,000 Annual Cap in out-of-pocket spending for prescriptions under Part D
Option for a monthly payment program to “smooth out” total out-of-pocket spending throughout the year, with an overall monthly maximum
• Patients will need to enroll into the program (opt-in)
• The earlier in the year you join the program, the more you can benefit
• Your monthly bill may fluctuate somewhat
• No one will pay more than $2000 for the year
$ Thousands Per Year
Recent Advocacy Events
Congressional “Lobby Day” Focus on Cancer Research Funding
Lobby Congress during annual appropriations process and ask for increased research funding via:
1. NIH (National Cancer Institute, National Institute on Minority Health & Health Disparities, ARPA-H)
2. CDC: Comprehensive Cancer Control Initiative
3. DOD: Congressionally Directed Medical Research Program (CDMRP) (myeloma-related research)
Congressional Briefing Focused on Oral Parity
Educate Congressional staff about the issue of Oral Parity and request their support to co-sign/advance the Cancer Drug Parity Act.
• One of the most widely attended Congressional Health Briefings of 2024 (attendance was 3x the average)
• Met with staff from key Congressional Committees
• Possible “IMF Lobby Day” in Sept. to move legislation
