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Capitol Hill Report: Members Host Hatch Visit on SMA Treatment

October 23, 2017

University of Utah Hosts Senate Finance Committee Chairman Orrin Hatch
By Nicholas E. Johnson, MD, AAN Board of Directors and Government Relations Committee Chair

Last week, my colleagues Stefan M. Pulst, MD, FAAN; Gordon Smith, MD, FAAN; Russell Butterfield, MD, PhD; and I had the pleasure of hosting Senate Finance Committee Chair Orrin Hatch (R-UT) at our clinic at the University of Utah (U of U).

17 Hatch Visit

Pictured: Russell Butterfield, MD, PhD; Stefan M. Pulst, MD, FAAN; Senate Finance Committee Chair Orrin Hatch (R-UT); Nicholas E. Johnson, MD; and Gordon Smith, MD, FAAN.

The Senate Finance Committee is where most of the legislation impacting both patients and physicians is referred. This makes Chairman Hatch an important voice to patients we treat and the research we do on spinal muscular atrophy (SMA) at U of U. 

Sen. Hatch also met with patients and families impacted by SMA and the president of a patient group, Cure SMA. Patients with SMA recently had a breakthrough with the FDA's approval of the first-ever approved therapy, nusinersen (marketed as Spinraza). As exciting as it is to have a new treatment, nusinersen is out of reach for many families with costs of $750,000 in the first year alone. A patient with SMA described the situation to Sen. Hatch stating the new drug is “like winning the lottery, but not having the gas to cash in the ticket”.

I am thankful to Sen. Hatch and his staff for meeting with us at U of U and hearing firsthand about the situation faced by patients and families with devastating neurological conditions. The AAN is developing plans through our Drug Pricing Task Force to increase access to high-cost drugs. Currently, the Orphan Drug Act encourages the discovery of drugs like nusinersen, but changes are clearly needed. The AAN is working with Sen. Hatch to discuss potential changes, and others in Congress will be part of the solution. 


Presidential Administration Takes Action Against Affordable Care Act 
The White House announced it will stop funding cost-sharing reduction (CSR) payments, which are federal funds paid monthly to insurers to further discount plans sold in the individual Affordable Care Act (ACA) insurance marketplaces. Four days later, the Health, Education, Labor, & Pensions Chairman Sen. Lamar Alexander (R-TN) and Ranking Member Sen. Patty Murray (D-WA) announced they have struck a deal to continue to fund the CSR payments for two additional years, in exchange for providing states some flexibility around parts of the health care law. It is unclear if sufficient support exists in the Senate and House for this agreement.

  • In August, the Congressional Budget Office (CBO) estimated that ending the CSR payments would cause premiums to increase by 20 percent for the most common plans in the ACA insurance marketplaces.
  • AMA President David Barbe, MD, released a statement opposing President Trump's decision due to the effect on patients' access to care. The AAN has similarly supported CSR payments to ensure patients with neurologic disease have access to the care they need.

The White House also issued an executive order directing federal agencies to issue new regulations and guidance regarding health insurance. The executive order includes three main provisions:

  • Expand the ability of small businesses and other groups to buy health insurance through association health plans. It does not clarify if individuals not associated with a group can join association health plans.
  • Eliminate limits on short-term health insurance plans, allowing them to last for 12 months (rather than the three-month limit) and be renewable
  • Allow people to use health reimbursement accounts to pay for premiums 

These new plans could potentially affect individuals with neurologic disease by attracting younger and healthier individuals, causing premiums to rise for those with chronic conditions who remain in the ACA marketplace. Also, the new plans may not cover expenses associated with many costly neurologic conditions.

Many patient and provider groups have expressed concern with the executive order. As new regulations are developed to implement the changes, the AAN will continue to advocate for changes that maintain access to high-quality neurologic care.

AAN Neurology Drug Pricing Task Force Updates Board 
The AAN Neurology Drug Pricing Task Force presented to the Board of Directors their preliminary findings on addressing ultra-high neurologic drug costs.

The 17-member task force includes a wide spectrum of AAN members and leaders.

The task force is continuing to assess the impact of ultra-high-priced breakthrough drugs on prescribers and patients. For example, nusinersen, the first-ever treatment for spinal muscular atrophy, can cost over $750,000 just in the first year and over $375,000 in each subsequent year.

The task force is meeting in person this week and will present its final report and recommendations to the Board of Directors in February 2018. 

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