A few weeks ago, I met Jacob Fraker, a legislative aid of Assemblymember Susan Eggman at the California State Capitol. More importantly, Jacob is part of the rare disease community as well. He has been living with the rare genetic condition cystic fibrosis his whole life. His work focusses on health policy, specifically rare disease advocacy. And he is very passionate about his new project: Bill 2283, which would create a rare disease advisory council and hire an ombudsperson in the state of California.
What’s bill AB 2283?
Bill AB 2283 wants to create a rare disease council in California involving mostly advocates of all ages from the rare disease community. Moreover, two patient organizations, a representative of the drug review board, the state, and a pharma company, as well as a rare disease nurse and doctor, would be part of the board.
Additionally, an ombudsperson will be hired. This person can take care of all issues that might arise for people with rare diseases, for example, disagreements with your health insurance over medication or tests you need. Jacob wants that people living with one of the 7000 rare diseases can have a normal life from birth to death.
How can you support AB 2283?
To get this bill signed into law, Jacob needs your support. And this is what you can do:
- Send a letter to your legislator or the chair of the health committee directly and explain why this bill is important to you. This can be your own story, the narrative of a friend or family member.
- You can call the legislator and ask to support or co-author the bill.
- You can share the bill with your support groups and other people with rare diseases so that they can support the bill too.
I had the honor of interviewing Jacob for ABILITY Magazine. The following article shares more detailed information about AB 2283:
(Feel free to share the ABILITY Magazine article with everyone you think would want to support the bill).