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Support for Families. Research for a Cure.

National

MPS
Society

August 10, 2010

Office of Consumer Information and Insurance Oversight
Department of Health and Human Services

Attention: OCIIO-9994-IFC

Mailstop C4-26-05

7500 Security Boulevard

Baltimore, MD 21244-1850

Re: File Code OCIIO-9994-IFC

Dear Sir or Madam:

The National MPS Society appreciates this opportunity to comment on the Interim Final
Rule with Request for Comments entitled “Patient Protection and Affordable Care Act;
Requirements for Group Health Plans and Health Insurance Issuers Under the Patient
Protection and Affordable Care Act Relating to Preexisting Condition Exclusions,
Lifetime and Annual Limits, Rescissions, and Patient Protections” (Final Rule and
Proposed Rule).

The National MPS Society exists to find cures for MPS and related diseases. We provide
hope and support for affected individuals and their families through research, advocacy
and awareness of these devastating diseases.

Our comments on the Interim Final Rule with Comments are focused on annual limits
and the definition of “essential health benefits”.

Annual limits

Recommendation: The Secretary of HHS should use its authority to establish higher
minimum annual limits for persons with rare genetic disorders.

We are pleased that the Agency has established minimum individual annual benefits, and
that the dollar amounts increase over the timeframe of 2010-2014. Persons with rare
genetic disorders may have exceptional medical needs and incur costs that exceed the
limits you outline in this Interim Final Rule. When these persons exceed their annual
limit, they often cannot afford life sustaining medical care. Persons with rare diseases

then find themselves in untenable situations- in that their pre-existing condition makes it
P.O. Box 14686,

Durham, NC

27709-4686

t: 877.MPS.1001

p: 919.806.0101
:: 919.806.2055
www.mpssociety.org



impossible to switch insurers or go without care in order to qualify for the temporary high risk
pool. Therefore, we ask that you utilize your discretion to establish higher annual limits for
persons with rare genetic disorders.

Essential Health Benefits

Recommendation: The Secretary of HHS should establish a transparent process and
establish a meaningful definition of “essential health benefits.”

Lifetime and annual limits apply to ‘essential health benefits” only. The Interim Final Rule
states, “These interim final regulations define “essential health benefits” by cross-reference to
section 1302(b) of the Affordable Care Act and applicable regulations. Regulations under section
1302(b) have not yet been issued.” Section 1302(b) permits the Secretary to establish “at least”
the categories specified in the Act. We urge the Secretary to establish a transparent process to
define “essential health benefits” and promptly establish its definition of “essential health
benefits”.

The standard of care, and often the only available treatment for persons with rare genetic and
metabolic disorders may include services and items that would only be covered under an
expanded definition of “essential health benefits.” We welcome the opportunity to engage in
dialog with HHS to ensure that these services and items critical to the medical management of
persons with rare genetic disorders are considered “essential health benefits” subject to the array
of protections under the Accountable Care Act.

In summary, the Accountable Care Act provides the foundation for health care access for all
Americans. We ask the Secretary to be mindful and use its discretion to ensure the needs of
persons with rare genetic disorders are protected in its implementation of this important law.

Please do not hesitate to contact us with any questions regarding these comments.

Sincerely,

Larbao Dera

Barbara Wedehase, MSW, CGC
Executive Director