5 Things California: Gene therapy, Statewide HIE, Kaiser protests


Eli Kirshbaum


Our second newsletter for the month of November, 2021, features a breakdown of federal health policy developments from columnist James Capretta, our recent “5 Slides We’re Watching” conversation on gene therapy and rare diseases, and insight on addressing the youth behavioral health crisis.

As always, Thanks for reading our stuff!


Eli Kirshbaum
State of Reform 

1. Health provisions in the revised BBB legislation

With the release of President Biden’s scaled back “Build Back Better” plan, State of Reform columnist Jim Capretta broke down some of the health policy items that made their way into the president’s updated domestic agenda. The revised BBB plan includes Medicare coverage for hearing services and a permanent 6 percentage point increase in the federal matching rate for states offering HCBS services that meet new national standards.

Capretta’s latest column also dives into the details of the House’s version of the plan and its provisions that attempt to close the coverage gap. He says one of the plan’s provisions would enroll individuals in non-expansion states who are below the poverty line but don’t qualify for Medicaid or ACA subsidies in federally-subsidized commercial coverage from 2022-2025—and perhaps permanently. “If that is the case, it is possible the states that have not yet expanded Medicaid will never do so.”


2. Gene therapy and the promise for rare disease

Groundbreaking gene therapy treatments have tremendous potential to provide treatment to the around one in ten Americans living with rare diseases. But these game-changing therapies also bring with them new challenges, including how the individuals who need them most will get access to and be able to pay for these expensive treatments.

Our latest “5 Slides We’re Watching” conversation convened Jennifer Hodge, PhD, US Rare Neurology Medical Team lead at Pfizer, Angela Ramirez Holmes, founder and CEO of Cal Rare, and Ryan Fischer, chief advocacy officer at Parent Project Muscular Dystrophy, to discuss solutions to this complex issue.


3. Leaders analyze California’s health information exchange

Dr. Stanley Fletcher of Dr. Martin Luther King Jr. Community Hospital believes a statewide health data exchange will catalyze health care delivery in California. “So much of the need for us to care effectively depends on all the data that’s been obtained prior to us seeing the patient. Otherwise, that care becomes redundant, duplicative, and typically wasteful,” he said at a recent Connecting for Better Health webinar.

Hazel Health’s Dr. Michael Flu added that the health information exchange should apply to schools as well as health systems. Read more on this forward-looking discussion about California’s imminent HIE here.



4. Little Hoover Commission offers recommendations to improve youth behavioral health

A decentralized children’s mental health system and workforce shortages are a couple of the key contributors to California’s youth behavioral health crisis, according to Bay City Capital Managing Director David Beier, JD. Beier joined several other leaders at a Little Hoover Commission webinar to deliberate how the state should respond to the pandemic-fueled crisis.

The Commission outlined three recommendations to address the issue: establish a single state leader for children’s mental health, build capacity for statewide approaches to supporting youth mental health, and make schools strong support centers for the mental health of their students.


5. Kaiser employees discuss protest efforts

Kaiser RN Johanna Noriega said she’s “very happy” with the terms of the temporary agreement reached on Nov. 13, but added that “nurses always need more.” She explained the canceled strike was focused on protesting Kaiser’s proposed two-tiered wage system, which would have cut the wages of new nurses.

Kenneth Rogers, a Kaiser psychologist in Sacramento, still plans to strike along with around 2,000 other mental health professionals on Nov. 19. He said the main goal of this strike is to improve working conditions and patient access to care. “… this is an organization that, at least for mental health, has long short-changed its employees and … patients in terms of the level of resources that they’ve contributed,” he said.