Nebraska Medicaid community engagement reporting requirement and people with HIV
Director
Division of Medicaid and Long-Term Care
Nebraska Department of Health & Human Services
301 Centennial Mall South
Lincoln NE 65809
Dear Mr. Gonshorowski:
The HIV+Hepatitis Policy Institute is a leading national HIV and hepatitis policy advocacy organization promoting quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.
We write to urge the Nebraska Medicaid program to include an explicit exemption for all people living with HIV from the community engagement reporting required under HR 1.
On May 1, Nebraska intends to become the first state in the nation to implement the new community engagement requirements.
People with HIV are living with a lifelong serious and complex medical condition and have special medical needs: they cannot stay healthy without continuous access to their lifesaving HIV treatment. Any gap in treatment risks serious health consequences, including failure of viral suppression and the risk of onward transmission. Longer treatment gaps are potentially disabling, allowing progression to AIDS, after which life expectancy is limited.
People with serious and complex medical conditions and special medical needs are statutorily exempt from the community engagement requirement; however, absent federal guidance, states can define which populations qualify. We urge Nebraska Medicaid to explicitly state that all people living with HIV (both symptomatic and asymptomatic) have special medical needs and fall under this exemption.
This interpretation is consistent with long-standing federal precedents. For decades, Congress and Unites States DHHS have considered HIV (both symptomatic and asymptomatic) as a serious, life-threatening, and potentially disabling condition.[1]
All people with HIV should be exempted from the community engagement automatically, without having to navigate cumbersome new bureaucratic procedures to document their status with each Medicaid recertification.
Under statute, states are directed to maximize ex parte verification of eligibility in relation to the community engagement requirements. Automatic exemption through use of data already available to the Medicaid program (such as diagnostic codes and claims data) minimizes the burden on the enrollee. It also reduces the administrative burden on the state and on the health-care workforce providing care to people with HIV. Additionally, since HIV is a lifetime condition that will not change over time, this assessment should only be carried out once.
To put the onus on individuals living with HIV to navigate administratively cumbersome forms of verification of HIV status is unnecessary and puts their health at risk. In addition, since people with HIV face continuing stigma and discrimination, many are reluctant to disclose their HIV status in Medicaid enrollment and recertification paperwork, further amplifying the importance of using ex parte verification of HIV status.
Approximately forty percent of people living with HIV nationwide are enrolled in Medicaid, making Nebraska’s implementation of the new community engagement requirements of the highest importance to people living with HIV, their clinical care teams, and communities. As the first in the nation to begin enforcement of the new community engagement requirements, Nebraska has a chance to set a humane and clinically sound precedent.
We encourage Nebraska DHHS to engage people living with HIV and their clinicians to better understand the impact of these policies. We are ready to assist in any way. Should you have questions or comments, please feel free to contact me at cschmid@hivhep.org or Kevin Herwig at kherwig@hivhep.org. Thank you very much.
Sincerely,
Carl E. Schmid II
Executive Director
[1] For example, 28 CFR 35.108(b)(2) or 78 FR 42233