Advocacy Monitor

To address the opioid crisis, several policies have been enacted that limit prescriptions. As a result, people in pain continue to face barriers to accessing medication and managing their pain. Our community is disproportionately affected by these policies because many people with disabilities live with serious or chronic pain.

In November 2022, the Centers for Disease Control and Prevention (CDC) issued a new updated Guideline for Prescribing Opioids, warning policymakers that limits on prescribing have caused harm to people living with pain.

Despite the CDC’s 2022 guidance, many who have relied on opioid medications, often for decades, continue to see their medication forcibly reduced or eliminated. Some have been denied medical care altogether. Physicians remain under pressure to reduce or discontinue long-term prescriptions, even for people who benefit from the medication. The harm caused by these policies, now documented in numerous studies, has ranged from increased pain to loss of function, to suicide or resorting to illegal substances.

The harm cannot be undone, but action now can stop further harm.

Therefore, NCIL has drafted two new letters to the federal government.

• Add your organization as a signatory (https://bit.ly/47JNAmA)
• Read Letter 1: Fees and FDA approval (https://bit.ly/4a6yclN)
• Read Letter 2: Barriers to Accessing Prescriptions and Telemedicine (https://bit.ly/3uHfGjH)

Our first letter will be sent to Congressional leadership, leaders of key committees, and sponsors of key bills.

The Centers for Medicare & Medicaid Services (CMS) has provided an important opportunity for beneficiaries, and their advocates, to convey experiences and concerns about the devastating lack of access to Medicare-covered home health aides, especially for individuals living with chronic and longer-term impairments.

In the recent 2024 Notice of Proposed Rule Making (NPRM) for Home Health Care, CMS issued a Request for Information (RFI) seeking responses to 8 questions about access to Medicare-covered home health aides. 

• Open a Word document with the 8 questions (https://bit.ly/44hoGIq)
• Read the NPRM – PDF (https://bit.ly/47BcYv5)
• Read a sample response (https://bit.ly/3OYPVD6) or an executive summary (https://bit.ly/45cItKv) from the Center for Medicare Advocacy

Beneficiaries and advocates must weigh in and discuss the critical need for availability of aide services and the consequences when qualifying coverage is not available. We ask that you please consider responding to the Home Health Aide RFI with your own stories, concerns, and experiences.

Deadline: August 29, 2023; 5:00 p.m. Eastern.

To submit your comments:

1. Go to https://bit.ly/45AgRid
2. Click on the blue “Comment” box in the upper left corner of the screen;
3. Under the “Commenter’s Checklist” section, there will be a “Comment” text box section, this is where you would input a short introductory paragraph stating who you are and what your comments focus on.
4. Under the “What is your comment about?” drop-down menu, select the “Health Care Professional/Association – Nursing Aide” option;
5. Under the “Attach Files” section, this is where you will upload a pdf version of your letter;
6. Type in your email address under the “Email Address” section;
7. We recommend checking the box to “Opt to receive email confirmation or submission and tracking number?”
8. Under the “Tell us about yourself” section, select whether you’re submitting as an individual or as an organization, and fill out the corresponding requested information;
9. Check the “I’m not a robot” box; and
10. Click “Submit Comment”.