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There are three main funding sources for health care in the United States: the government, private health insurers and individuals.
While numbers in the table above, prepared by US Congressional Research, don’t quite add up (but these are government figures after all!), they suggest that ~91% of the US population of 327 million has some kind of health insurance coverage. It suggests that ~ 68% of the population has private health cover (employer or self-funded) and ~21% are covered by Medicaid/CHIP (State Childrens Health Insurance Program) which cover low income families and those with certain disabilities, under the age of 65.
The US government does not directly regulate or control the price of prescription drugs. There is no PBS in the US, with prescription drugs paid for through the various healthcare schemes.
Medicaid is administered and funded in equal share by Federal and State governments. Eligibility for Medicaid is determined at the state level and roughly half of enrollees nationwide are children. Medicaid puts a limit on the number of prescriptions that are covered per enrollee and most states require prior authorization (PA) before granting coverage of specific medications. Medicaid programs typically require modest copayments for each prescription.
Of the US$348 bn spent on prescription drugs in the United States in 2020, 40% was by private insurance, 32% by Medicare, 10% by Medicaid, 4% by other public insurance, 1% by other payers and 13% was out-of-pocket.
In order for states to receive federal Medicaid funding for prescription drugs, drug manufacturers are required to have a rebate agreement with the Secretary of Health and Human Services. Under the Affordable Care Act, the minimum rebate for innovator drugs is 23.1% of Average Manufacturer Price, or a minimum of 17.1% for drugs with only paediatric indications. Because the Medicaid rebate is based on prices paid in the private sector, manufacturers have an incentive to increase private sector prices.
I note that the Colorado State Government’s Joint Budget Committee’s healthcare costs budget estimate for FY 2023/2024 makes specific allowance for the “impact of specialty drugs”. It has estimated US$10m costs for trofinetide, based on a full year of sales and then applied a rebate of 17.1%, arriving at a calculated financial impact of US$8,290,000. Colorado has ~1.8% of the US population.
The primary source of payment for trofinetide US Rett patients will be Medicaid and private health insurers and probably a combination of both. In the case of patients accessing Exondys 51 – the drug manufacturer, Sarepta, saw a 40% Medicaid/60% private health insurance claim breakdown.
Acadia has provided the following information on access on its DAYBUE website
How can I get access to DAYBUE for my child?
Once your doctor prescribes DAYBUE for your child, the next step is to enroll in Acadia Connect. This can happen in 1 of 3 ways:
Acadia Connect will work with you to get access as quickly as possible.
- You can sign the Prescription and Enrollment Form at your doctor’s office before they submit the prescription
- If you could not sign the Prescription and Enrollment form, you will need to sign and submit the DAYBUE Patient Consent Form available on the Acadia Connect website
- You can call Acadia Connect at 1-844-737-2223 and a Nurse Care Coordinator will help you enroll in the program
How much will DAYBUE cost?
We believe cost should never be a barrier to treatment. The cost for DAYBUE will depend on your individual insurance coverage. The Acadia Connect team will confirm your information and help you understand your out-of-pocket insurance cost. If you are unable to afford DAYBUE, Acadia Connect can provide information on appropriate financial assistance options you may be eligible for.
How can I find out if DAYBUE is covered by my insurance?
Acadia Connect is here to help you understand your insurance coverage for DAYBUE. Once enrolled in Acadia Connect, you will be assigned a Nurse Care Coordinator who will verify and help you understand your insurance coverage. If needed, they will provide information on financial assistance options available to you. (Acadia Connect is open for enrolment from 17 April, 2023)
https://www.vox.com/2014/4/30/18077...ree main funding,half of all medical spending.
https://www.chcf.org/publication/us-health-care-spending-who-pays/
https://www.census.gov/library/publications/2021/demo/p60-274.html
https://www.statista.com/statistics/200960/percentage-of-americans-covered-by-medicaid/
https://www.healthline.com/diabetes...pricing#Who-Really-Benefits-from-Drug-Rebates?
https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01943-w
https://www.ncbi.nlm.nih.gov/books/NBK56182/
https://www.acadiaconnect.com/
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- Ann: FDA approves Daybue - the first treatment for Rett syndrome
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