ME & Long COVID patients need telemedicine prescribing flexibility

#MEAction, Long COVID Justice, Strategies for High Impact and Patient-Led Research Collaborative have submitted a joint public comment to the U.S. Drug Enforcement Administration (DEA) expressing our concerns with its proposed rule for telemedicine prescribing of controlled substances when the practitioners and the patient have not had a prior in-person medical evaluation.

Read Letter to DEA

Data shows that the rollback of telemedicine prescribing will create further barriers to essential medication with potentially life-threatening consequences, worsening care access problems for people living with infection-associated complex chronic conditions such as ME/CFS and Long COVID, many of whom rely on medications for cognitive impairment and for pain.

Pain is always with me. It follows me around like my shadow. Just as a shadow changes shape with the light, my pain expands, contracts, and tries to swallow me whole. There is nowhere I go, nothing I do that is unaffected by pain.

— Jennie Spotila

Person with ME

Effective symptom management is a critical issue for the quality of life of people living with ME/CFS, but too often pain management is overlooked in this population. As Jennie Spotila, a person with ME/CFS described it in her testimony to Congress, “Pain is always with me.  It follows me around like my shadow. Just as a shadow changes shape with the light, my pain expands, contracts, and tries to swallow me whole.  There is nowhere I go, nothing I do that is unaffected by pain.”

Chronic pain is a common symptom of Long COVID as well, and these patients also face significant barriers to accessing care. One of the key recommendations of the recent HHS Health+ Long COVID Report is to “Remove the care navigation and coordination burden from people with Long COVID and their caregivers,” necessitating an “increase in telehealth services for people who have difficulty accessing care.” The DEA’s proposed rule will result in patients with ME/CFS and Long COVID losing access to necessary medication and care if implemented. 

This rule will disproportionately disrupt the care of people in rural areas; people of color; queer people; women; disabled people; and people with rare and rarely-diagnosed diseases, all of whom already face substantive barriers in obtaining informed, ethical, appropriate care. For example, many people with ME/CFS and Long COVID would need to travel out of state in order to receive care from an expert in their disease; and ME/CFS patients are often too disabled to make in-person visits and are unable to access home visits.

We support the recommendation of the National Pain Advocacy Center in their comment on this proposed rule in which they “strongly urge the DEA to substantially amend the rule to permit telemedicine prescribing of controlled medications with safeguards that do not impede access to care.”

We are concerned about the impact of this rule on trans and queer people with Long COVID and ME/CFS. Telehealth services have been instrumental in seeking care safely for trans and queer people, especially as they face ongoing discrimination in health care spaces and witness increased attacks on their ability to access lifesaving care.

We therefore also support the recommendations of The National Center for Transgender Equality and the Human Rights Campaign in their recommendations to the DEA to consider:

1. Extending the six-month transition period following the end of the PHE to include all prescriptions, not just existing prescriptions;

2. Expanding the length of an initial prescription for a Schedule III-V controlled substance prior to an in-person visit from 30 days to at least 90 days;

3. Clarifying that in-person appointments for blood tests or other lab work qualify for purposes of prescribing controlled substances through telehealth visits.