Volunteer Opportunity: National Cancer Institute
Volunteers Sought to Share Myeloma Patient Experience: The NCI’s Advocacy Relations Department reached out to the IMF for help. They are seeking individuals with a connection to myeloma to utilize their experiences to help the NCI. They noted that they have many different volunteer opportunities and are happy to discuss the opportunities with you before committing. Here is some basic criteria to participate:
- a personal connection to cancer, either as a patient, survivor or caretaker;
- in addition to their personal experience, they also have the collective patient perspective, meaning they know and can share/represent the priorities of the myeloma community; and
- an interest in participating in research activities.
Why is this important? This brings the patient voice to the NCI and helps shape the myeloma research they do.
Please email both [email protected] and [email protected] to learn more about this opportunity or express your interest.
IMF Supports Increasing Access to Clinical Trials
IMF Supports Increasing Patient Access to Clinical Trials: The IMF signed onto a letter to the Office of the Inspector General requesting them to create a safe harbor to increase diverse and underserved trial participation by allowing sponsors to provide coverage for indirect trial costs. That would include things like travel.
Why is this important? Clinical trials are not currently accessible to everyone. Studies show that barriers to trials exist for those living in rural areas, those who are economically advantaged, and for racial and ethnic minorities. Clinical trials are used to prove that drugs are safe and effective. If trials are not diverse, we cannot determine whether treatments actually work for everyone.
View the Patients Access to Clinical Trials Advocacy Letter.
Drug Negotiation Timeline Released
Timeline for Drug Negotiations Released: This month, it was announced that the first 10 Medicare Part D Drugs for negotiation will be selected and made public by September 1, 2023. The negotiation process will result in a maximum fair price for each drug to be reached by September 2024, which would take effect in 2026. Each year, additional drugs will be added for negotiation.
The Background: The Inflation Reduction Act, which included many healthcare provisions, contained language that would allow the federal government to negotiate certain drugs.
Other Items To Know: The Inflation Reduction Act included several provisions aimed at increasing affordability and patient access to drugs. Supporters of this particular provision believe it could greatly impact affordability. While many view this as a positive step towards affordability, there are many others who fear it could impact innovation.
Want to get involved?
Interested in learning more or taking actions about our federal and/or state priorities? Email the IMF Advocacy Team, [email protected], to find out ways you can make your voice heard. Find us on the Twitter and Facebook! We will be sharing the latest news on legislation and policies we are tracking.