Patient Groups Very Critical of TrumpCare

James Radke and Mathew Shanley

Will the American Health Care Act (AHCA) be a positive one for rare disease patients?  In its current form, the consensus seems to be no.
Ten organizations, including the National Organization for Rare Disorders (NORD) have come out against the AHCA. The groups are:
  1. American Cancer Society Cancer Action Network
  2. American Diabetes Association
  3. American Heart Association
  4. American Lung Association
  5. Cystic Fibrosis Foundation
  6. JDRF
  7. March of Dimes
  8. National Organization for Rare Disorders
  9. National MS Society
  10. WomenHeart: The National Coalition for Women with Heart Disease
According to the patient groups, the 2 main problems with the AHCA are:
  1. The AHCA would cause at least 24 million Americans to lose health insurance, per the non-partisan Congressional Budget Office, and the coalition believes the AHCA “would profoundly reduce coverage for millions of Americans—including many low-income and disabled individuals who rely on Medicaid—and increase out-of-pocket costs for the sickest and oldest among us.”
  2. The MacArthur Amendment which would allow states to waive protections against health status rating. This amendment would allow insurers to charge higher fees to people with pre-existing conditions as they become part of a ‘high-risk’ pool.

The MacArthur Amendment

NORD specifically targeted the Amendment as being the antithesis of their own set of ‘Principles for Health Coverage Reform’.
NORD said, “The MacArthur amendment allows states who participate in a newly-created Federal reinsurance program (called the Patient and State Stability Fund) or create their own high-risk pool to apply for waivers that exempt insurance plans in the state from having to comply with community rating. In addition, the amendment allows states to set their own Essential Health Benefits (EHB) categories rather than complying with the ten Federal EHB categories.
“We do not support this amendment as it would jeopardize the health and wellbeing of rare disease patients across the country. Community rating prohibits insurers from charging individuals higher premiums based on health status. Without a community rating, pre-existing conditions protections are rendered moot, as insurance companies will once again be capable of charging higher premiums to those with pre-existing health conditions. Community rating is essential to maintaining access to quality and affordable healthcare coverage for rare disease patients.”

More Criticism

At the other extreme, some do not like the amendment because it does not go far enough.  According Diana Furchgott-Roth, a senior fellow at the Manhattan Institute, "Insurance companies need to have more flexibility in what plans they offer because that's one reason the cost of the plans is so high that you're required to offer all of these different types of coverage to people who might not want it." Furchgott-Roth said, "Why should people have to buy plans that cover maternity care if they won't have babies, or mental and drug abuse coverage if they think they won't need it?"
Representative Tom MacArthur, the New Jersey Republican behind the proposed health care amendment, was sure to retort in an interview with NBC News.
“I know there’s a lot of noise about this issue, and that people are afraid of what will happen. This is meant to protect,” he said. “I explicitly prohibit, in my amendment, any discrimination based on gender, and I explicitly prohibit any discrimination based on preexisting condition,” he continued.

The amendment was negotiated in April between MacArthur and House Freedom Caucus Chairman Mark Meadows, with consultation from the White House and House leadership.

No hearing or vote on the proposal is currently scheduled.
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