In a recent announcement, the National Organization of Rheumatology Managers (NORM) has released what they call the “Stop CMS Advocacy Toolkit,” cautioning rheumatology practice managers that drug payments from Medicare are at risk, and urging them to get involved.1

The toolkit, which has been offered by the Community Oncology Alliance, provides the resources needed to get involved and stop the “Medicare experiment.” Developed to customize responses according to disease states and specialties, the toolkit specifically allows you to tailor everything throughout the document to your specialty, and encourages you to include key messages. Some of the key messages include information about how the Centers for Medicare & Medicaid Services (CMS) experiment was created by the government without input from patients, the specialty, or people in the healthcare community. They also emphasize that the government is making decisions on behalf of physicians and their patients, and discuss how, sans evidence, the government is stating that specialists may not be giving their patients the correct treatments they need.

In addition, the resource provides information on how to customize and distribute the embedded letter to your patients, advocates, and staff; the letter details what is currently happening, why this is an important issue, and how recipients can get involved. Of note, people can text message the word MEDICARE to 52886, effectively registering as an advocate; call 202-851-2881 to be patched through to their respective congressmen and senators’ offices; and visit to send out an e-mail or publish a relevant post via social media.

The toolkit also includes a fact sheet explaining the details of the CMS experiment, which can be printed and easily made available throughout your practice, waiting rooms, and nurse’ stations. This fact sheet reiterates some of the key messages described earlier, and relays information in a format that is easy to read and understand.

Although, people can call 202-851-2881 and automatically be patched through to their respective congressmen and senators’ offices, the toolkit comprises access to a self-standing contact list of staff in congressional and Senate offices, including information about state and district advocates people can contact. In addition, patients and advocates can call 202-683-7977, which will prompt them for their zip code before putting them through to Congress offices. Healthcare professionals are recommended to use contact sheets and call or e-mail individual offices.

Talking points are also provided as part of the toolkit, and will help make the most of the calls with these offices by suggesting ways to clearly and quickly deliver your message. For example, they recommend that patients introduce themselves; state what condition they have; whether they are a patient, survivor, or advocate; the city and state they live in; and the purpose of their call.

Similarly, the toolkit includes a recommendation that healthcare providers introduce themselves, specify the condition they specialize in, their profession, the state they practice in, and the name of the representative or senator they are trying to reach. In addition, healthcare providers should explain why the CMS experiment is concerning to them, and why it is important to make decisions about payment models based on data. Healthcare providers should also mention the wide impact the proposed payment model may have on patients, and the role of personalized medicine in the treatment of patients with complex conditions.

Finally, the toolkit provides templates for patients and healthcare providers to easily e-mail Congress about this important issue. The e-mail templates—one each for healthcare providers and patients/advocates—include similar talking points as those provided for use when reaching out to your representative or senator by phone. “As an organization NORM represents hundreds of physicians and their patients,” the organization stated in the announcement. “It is our responsibility to break down access to care barriers that may impact our patients.”

NORM works with multiple partners to stop the Medicare average sales price fix, and has shared this tool with rheumatology practice managers so that they can take part in advocating for this cause as well.


  1. National Organization of Rheumatology Managers. Urgent NORM news: drug payments from Medicare at risk. Updated April 18, 2016. Accessed April 18, 2016.

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