Submitting public comments is an important way for self advocates to make our needs and priorities known when it comes to public policy. This March, there are two important opportunities for you to make yourself heard to the IACC and the Drug Enforcement Administration (DEA) regarding priorities for autism research and telemedicine.
Before March 22, 2023 Submit Your Public Comments to the IACC about Autism Research
The IACC makes recommendations about where federal funds for autism research should go and what subjects should be prioritized. The IACC meets several times each year to discuss where these funds should go and how much money different research subjects should get.
Self advocates have the power to influence what kinds of autism research the IACC funds. Right now, research funding on autism still disproportionately focuses on behavioral therapies, biomedical studies, and causation and “prevention.” Research priorities should reflect what the autistic community needs — and before each IACC meeting, we have the opportunity to tell the government what research should be prioritized, and where the gaps in funding are.
The IACC’s next meeting is April 4, 2023. Public comments are open until March 22, 2023.
Before March 28, 2023, Tell the Drug Enforcement Administration that Telemedicine is a Disability Rights Issue
During the pandemic, the declaration of a public health emergency allowed certain controlled medications (called schedule II-V medications) that previously required an in-person doctor’s visit, to be prescribed via telemedicine. With the end of the public health emergency declaration fast approaching in May, the DEA has announced its proposed permanent rules for the prescribing of controlled medications via telemedicine. These rules would require patients to see a doctor in-person before getting certain medications. However, these rules will expand patient access to some critical therapies beyond the scheduled end of the COVID-19 public health emergency.
If the proposed rule is implemented:
- If you already had your medication routine before the Public Health Emergency, these changes should not impact you. You can keep doing telehealth without needing to go back for an in-person appointment.
- If you did not have your medicine before the Public Health Emergency and got it during that time without seeing a doctor in-person, you may now need to have an in-person appointment before November 7, 2023 in order to retain treatment.
For example, under the proposed rule as it is currently written:
- People who have not seen a provider in-person can only be prescribed a 30-day supply of schedule III-V non-narcotics without an in-person visit. This will notably impact the gender-affirming care of people who are prescribed testosterone.
- Schedule II meds, such as ADHD meds including Ritalin and Adderall, will require an in-person visit for a prescription.
- Those who received telehealth prescriptions under the Public Health Emergency will have six months, or until November 7, 2023, to have an in-person appointment before the rule impacts their treatment.
It is important to note that the DEA is providing a flexible definition of in-person, such as allowing an in-person visit where someone is referred to a specialist that will prescribe medication to count as a qualifying visit, or having a remote provider call into an in-person appointment.
Even with this flexibility, there is the risk that many disabled people will fall into the gaps between these new rules and lose access to crucial treatment.
These rules are not finalized yet. The DEA has allowed a public comment period until March 28, 2023 where people can raise concerns and ask questions about how these new rules may impact their lives.
Submit a comment to the Drug Enforcement Administration by March 28, 2023 telling them that telemedicine is crucial to people with disabilities, especially people who cannot leave their homes easily, and those who are immunocompromised. Tell them about barriers that might keep you from being able to attend in-person visits or referrals from people who have seen them in person. If you live in an area that lacks providers that meet your needs in person, let them know how these rules will make it harder for you to get the care you need.
You can submit a comment using the form here.
We are glad to see that some treatments will continue to be fully accessible via telemedicine. However, we are concerned that reverting back to requiring in-person appointments will make access to care more difficult for people with disabilities, as well as those living in rural areas and people who cannot afford to take time off of work to commute to appointments. Telemedicine is an accessibility issue. Restricting its usage creates an artificial gap in care.
The full text of the proposals may be found here and here. The public has 30 days to review and comment on the proposals, which DEA will then consider before drafting final regulations.
While we are glad that the DEA will be keeping the flexibilities from the last few years for certain medications, it’s important that people send in comments to make sure disabled people don’t need to jump through more hoops to access the medications we need. Thank you so much.