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HFA joined with other patient groups, including many other bleeding disorders groups, in calling on the US government to restore federal funding for ACA navigators.

On July 10, the US Centers for Medicare and Medicaid Services (CMS) announced it will further reduce funding for navigators. (Navigators are individuals or organizations that are trained to help people buy insurance in the ACA exchanges.) CMS also announced that navigators will be encouraged to direct customers toward non-ACA compliant plans that the Administration is now promoting. These plans are cheaper but skimpier: they might not cover prescription drugs, for example, or they might cap how much they will pay out in benefits. You can read more about the CMS decision here. HFA and many local member organizations signed a group letter calling on CMS to restore navigator funding.

Along with other patient groups, HFA asked state insurance commissioners to investigate accumulator adjuster programs that limit the use of manufacturer copay assistance.

HFA continues its efforts to monitor, educate, and advocate with respect to Accumulator Adjuster programs (AAPs). AAPs are strategies that some health plans apply to patients who use manufacturer co-pay assistance to help with medication-related out-of-pocket costs. Under an AAP, the health plan accepts the co-pay assistance but then doesn’t credit that amount toward the patient’s overall deductible. This means the patient still has to personally pay deductibles, co-pays, and other out-of-pocket expenses up to the yearly out-of-pocket maximum, even as the health plan draws down the full amount of the co-pay card.You can read more about AAPs’ impact on people with bleeding disorders here and here.

In July, HFA joined with other patient groups in asking state insurance commissioners to investigate the implementation of AAPs – expressing particular concern that health plans give only limited or confusing notice of their AAP programs.

Quick hits:

  • Last spring, the Trump Administration released a report on drug prices, in tandem with a request from the US Department of Health and Human Services (HHS) for public input on various approaches to contain rising drug spending. HFA and NHF submitted joint comments on July 16thexpressing our concern over proposals that could increase costs or reduce access to life-saving bleeding disorders treatments. You can find our comments here (and additional coalition comments that we signed onto here).
  • On July 11th, the FDA published its Draft Guidance for Industry on human gene therapy for hemophilia. FDA chief Scott Gottlieb said this guidance, once finalized, will set forth the FDA’s views on clinical trial design to support the development of gene therapies for hemophilia – including what endpoints may be used to measure success. HFA CEO Kimberly Haugstad told the Pink Sheet newsletter that “FDA guidance to industry should focus on safety and mitigate risks to patients as well as require that approved therapies provide meaningful benefits.” HFA will closely review the FDA’s draft guidance over the coming months
  • In early July, CMS announced that it would suspend “risk adjustment” payments owed to certain health insurers under the ACA for 2017-18. The risk adjustment program protects coverage for people with pre-existing conditions by reallocating funds from insurers with a healthier customer base to insurers who have a larger share of less-healthy, costlier enrollees. You can read more about the CMS action here. On July 24th, CMS reversed course and issued a rule resuming the payments. HFA and other coalition members thanked CMS for its action.
  • Medicaid expansion continued to move forward in July. Health care advocates in Idaho and Nebraska enough signatures to get Medicaid expansion on the ballot for November (these states will be joining Utah, which earlier this year certified that advocates had collected the requisite signatures to put Medicaid expansion to a vote). In Maine, however, Governor LePage continued to block a voter-approved expansion of the state Medicaid program. Finally, a US district court ruled in July that CMS had wrongly approved work requirements imposed by Kentucky on its Medicaid recipients. HFA continues to monitor all these developments.
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