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Utah House approves $250,000 pilot to help families with bleeding disorders stay on private insurance
Summary
The House passed HB 33, creating a $250,000 annual grant and a five-year pilot allowing some patients to use 340B-eligible institutions for discounted drugs, a measure sponsors said will help families facing treatment costs of thousands to tens of thousands of dollars.
SALT LAKE CITY — The Utah House of Representatives on Feb. 2 passed House Bill 33, a measure to help people with bleeding disorders cover extraordinary drug and premium costs, voting 55–15 in favor.
Representative Litback, the bill sponsor, told colleagues the measure establishes a $250,000 annual grant administered by the State Department of Health to help eligible families with premium and COBRA payments and creates a pilot within the state’s high-risk health insurance pool (HIP) allowing certain patients to obtain drugs through 340B-eligible institutions, which receive deep federal discounts. "This little vial is $1,100," Litback said on the floor when describing the cost of treatments; she warned lifetime treatment expenses can reach tens of thousands of dollars.
Supporters said the grant is a stopgap to prevent families from being forced onto Medicaid, which carries asset tests and other consequences. Litback said about 34 people with bleeding disorders now receive Medicaid and that the state currently spends roughly $106,000 annually on those cases; she estimated about 350 families statewide have bleeding disorders. The pilot component would let eligible individuals choose participating institutions (the sponsor cited the University of Utah as an example) so savings from federal drug discounts can be passed to both the patient and the HIP pool.
Opponents and questioners pressed the sponsor on the program’s durability and fiscal scope. Representative Donaldson asked how long the $250,000 appropriation would last for multiple families; Litback replied the appropriation would be annual and the program would include guidelines to spread funds and limit per-family awards. Representatives raised alternatives such as CHIP and Medicaid; Litback said CHIP beneficiaries would be ineligible for this grant and that Medicaid requires asset transfers that make it a poor substitute for many working families.
Lawmakers described procedural options during debate: a motion to "circle" the bill (postpone for further study) was offered and rejected before members returned to floor debate and a final vote. Supporters urged colleagues to consider the human stakes, with Representative Mascaro calling the program a five-year pilot to evaluate effectiveness and safeguards, and Representative Crossgrove stressing the hereditary nature of many bleeding disorders.
HB 33 will be referred to the Utah Senate for further consideration.
What happens next: The bill creates a grant program with administrative guidelines to be implemented by the Department of Health and directs the pilot’s oversight through the HIP pool board, which may end the pilot early if costs prove unsustainable.
