Support Access To A New Therapy
Tips for Success
- Talk to other patient groups at conferences and other events to share strategies that have been successful and those that have not been.
- National Organization for Rare Disorders (NORD) and Global Genes provide multiple opportunities each year to meet other groups.
- Rare Disease Day events may also provide opportunities.
- Watch for conferences focused on achieving reimbursement through public and private insurance providers for newly marketed therapies.
- If your newly marketed therapy uses a cutting edge technology, such as gene transfer, consider collaborating with other patient groups who also have a newly marketed therapy using the same technology.
- Request members of your disease community share with you their own successes with specific insurance providers.
- You may be able to leverage one person’s success into a more global acceptance by the specific insurance provider.
- You can share the strategy used to gain approval with other members of your community who have the same medical insurance provider.
- Determine whether there are any common strategies that might be applicable to other insurance providers.
- Develop a toolkit of possible strategies that individual patients/families may use to gain reimbursement approval.
- Involve members of your Scientific/Medical Advisory Board as well as the specialists who treat your disease communities to advocate for insurance provider reimbursement.
- Many professional societies have advocacy committees. You, members of your Scientific/Medical Advisory Board, or specialists in your clinical care network may consider reaching out to these committees to determine if a collaboration can be formed.
Resources
Working with Insurance Providers
Value and Coverage Program
FasterCures (link)
Value & Coverage Reports and Briefs
FasterCures (link)
Working with Regulators: A Focus on CMS
Cancer Policy Institute (link)
The Patient Voice in Value: The National Health Council Patient-Centered Value Model Rubric
National Health Council (link)