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Nov. 29, 2012

TOPIC: Featured News

What Would You Consider “Essential Health Benefits” For the Disease of Concern to You?

Posted by Peter L Saltonstall

December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS).  Essential Health Benefits are the core package of items and services that must be offered in individual and small group health plans under the Affordable Care Act.

This is an incredibly important topic, but one that might slip by unnoticed because:

  • The proposed rule is long and complex
  • The time to review it is short and during a holiday period
  • The benefits differ from state to state and
  • Some people may assume, mistakenly, that this will never affect them because the rule initially only applies to individual and small group plans.

However, it’s important to remember that the Essential Health Benefits being identified now will serve as the minimum floor of coverage for the state marketplaces that were created by the Affordable Care Act.  As such, they will create a precedent on which future comparisons will be made, possibly for years to come.

Essential Health Benefits are being defined in many different ways.  For instance, is medical food for management of a chronic disease like PKU an Essential Health Benefit?  In some states, it will be covered while in others, it may not.  The same may be true for many other health services.

NORD will be reviewing the documentation and submitting comments by the deadline.  In the meantime, we encourage our constituents to read this proposed rule and an accompanying one on health insurance market reforms (see links in blog posted Nov. 28 by Diane Dorman).

What would you consider Essential Health Benefits for the rare disease of particular concern to you?  If you were going to go out and buy health insurance, which benefits would you prioritize most?

Your comments, posted below, will be helpful as we consider NORD’s response to the proposed rule.

4 Responses to “What Would You Consider “Essential Health Benefits” For the Disease of Concern to You?”

  1. Juanita Coy says:

    Essential Health Benefits for me:

    1.The Rebif injections that I take 3 times a week are very expensive. If I did not have insurance, I could not pay for it! Also, I take Provigil, Lexapro, etc. My health would be definitely effected it my insurance could not help.I feel my MS would worsen.

    2. The visits to my Neurologists would be out of my financial range as well. He is of great help to me in deciding how to handle my MS. I visit him twice a year.

  2. Mia DeFino says:

    Essential Health Benefits for RSD/CRPS

    1.Immediate access to diagnostic procedures and doctors (Time is of the essence!)

    2.Series of stellate ganglion blocks (outpatient hospital)

    3.Intensive and prolonged rehabilitation at OT/PT

    4.Access to prescriptions for anxiety/depression, pain relief, sleep aids, compression glove for endema, tens unit, far infrared heating pad, neurogenic cream

    5.Daily living modification consultant and access to adaptive technology

    6.Alternative therapy options: trigger point needling, acupuncture, massage therapy, cranial sacral therapy, naturopathy

  3. Linda Kocher says:

    Essential health benefits for MCAD:

    (1)yearly visits with genetic metabolic physician for bloodwork/nutrition evaluation and (2) health insurance coverage of levocarnitine

    I am currently appealing a decision by our health insurance company, which states that it no longer has to pay for my daughter’s levocarnitine Rx because it claims it is available OTC. However, OTC carnitine, according to the FDA, is a dietary supplement and as such is considered a “food”, is not regulated by the FDA, and cannot be promoted as a treatment for a specific disease–this would put the company (and by extension, the insurance company) in violation of DSHEA, wouldn’t it????

  4. Cheryl says:

    Must cover formula and low protein foods pharmaceuticals that lower her levels.

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