Eggman will continue to advocate for the rare disease community despite Newsom’s veto on Rare Disease Advisory Council bill – State of Reform
In his final legislative signings of the year, Governor Gavin Newsom made a decision last week to veto Senator Susan Eggman (D – Stockton) widely supported Senate Bill 247.
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The bill would have created a rare disease advisory council within the California Health and Human Services Agency, which would have implemented regulations, data collection methods, and best practices for disease research and care. rare such as cystic fibrosis and muscular dystrophy.
In his veto declaration, Newsom said:
“While it is important that the public, providers, state agencies and private partners have access to information on rare diseases, the purpose and functions of the advisory board, as would require SB 247, are large and expensive. Bills with a significant fiscal impact, such as this measure, should be taken into account in the annual budget process. For this reason, I cannot sign this bill.
Having been presented twice before, this session marks the closest passage of the bill. Eggman told State of Reform his office was disappointed with the governor’s decision, but his work for the rare disease community would continue.
“This bill would have been an important first step in creating a long overdue place at the table for the rare disease community… Whether it is cost, access or quality of care, we are all looking at the issues. angles of the problem. I would certainly like the state to get more involved in the study of rare diseases, as we hope that more public funding in this space will help reduce the costs of rare disease drugs and increase the number of rare diseases. diseases for which FDA approved treatments, which are some of the most expensive treatments in the world.
According to a source familiar with the matter, there is a considerable amount of conjecture as to why Newsom vetoed the bill, with some stakeholders questioning the governor’s financial reasoning to veto the legislation. Some speculate that the administration is keen to cover the cost of expensive drugs the board would recommend, which may not be on Medi-Cal’s list of approved drugs and therefore costly to the state.
A spokesperson for California Life Sciences, a strong supporter of the bill, expressed disappointment with the veto and said he intended to continue working with lawmakers to create the council.
“California life science companies will continue to innovate and seek to develop cures for rare diseases in this state and around the world. At the advocacy level, we want to help legislators develop and improve policies that have a significant impact on the rare disease community. Patients, families, caregivers and life science stakeholders bring critical perspective, expertise and understanding to the table, which is why California Life Sciences (CLS) has made SB 247 one of its main priorities this year. CLS will continue to work with Senator Eggman and legislative leaders to establish a rare disease advisory council during the next legislative session in 2022. ”
When asked if she would reintroduce the bill in the future, Eggman said she is still evaluating bills she brings forward next year.