2021 Advocacy Recap

Thank you for all your support!

The Rheumatology Nurses Society (RNS) Advocacy Committee would like to send a heartfelt thank you to all of the support throughout 2021. It is through your partnership that we have been able to sign on to over a dozen initiatives on the national and state levels, and encourage others to learn about how they too can utilize their voice, and make a change. Below you will see a brief recap of the bills we’ve signed onto.

RNS Responds on a National & Federal Level

Federal advocacy is accomplished in your elected official’s home district or on Capitol Hill in Washington D.C. Within the regulatory process, it can be accomplished through patient interaction with the FDA, other government agencies or national organizations.

Orphan Drug Tax Credit
The RNS recently signed onto a letter addressing the importance of the Orphan Drug Tax Credit (ODTC) for people and families living with autoimmune disease and urged members to protect the ODTC in the Build Back Better legislation. Since being enacted in 1983, the Orphan Drug Act has spurred the approval of 652 drugs for 1,006 rare diseases. It has been a lifeline for millions of individuals with autoimmune diseases who face significant health challenges and often require a unique combination of drugs to diagnose, treat, and manage their symptoms.
To read the full letter, please click here

CMMI Multi-Stakeholder Administration Letter
The Center for Medicare and Medicaid Innovation (CMMI) is an invaluable asset in attaining objectives representing patients across the country. The primary point of this letter is to convey that transparency, communication, and collaboration are keys to achieving a stronger CMMI.
To read the full letter, please click here

Zero Copay Stakeholder Letter
As policies are considered to reduce prescription drug spending, we joined the ask that policies be enacted that would increase the uptake of biosimilars, specifically by reducing or eliminating out-of-pocket costs for Medicare Part B patients taking a biosimilar through a zero-co-pay policy.
To read the full letter, please click here

Patient-Centered Drug Pricing Policies for Autoimmune Patients
On behalf of the estimated 50 million Americans with autoimmune and immune-mediated diseases, multiple organizations joined a sign-on letter surrounding the work being done in Congress to address issues relevant to patient access to care and drug affordability.
To read the full letter, please click here

Patient Cost Sharing and Prescription Drug Access
The RNS agrees with the comments urging CMS to leave intact its existing policy, which allows the use of copay accumulator programs only in situations where a medically appropriate generic drug is available.
To read the full letter, please click here

Policies & Solutions to Improve Prescription Drug Affordability for Patients
Patients today face significant prescription drug affordability challenges that have only grown worse due to the cost of medications along with insurance benefit design, including high deductibles and high patient cost-sharing often in the form of co-insurance.
To read the full letter, please click here

Patient Protection and Affordable Care Act
The RNS signed in agreement with a proposal to reverse previous policy related to how PBMs and insurers may determine whether patients have met their annual cost-sharing limits. CMS proposes to exclude this type of assistance from the definition of cost-sharing.
To read the full letter, please click here

H.R.3’s The Elijah E. Cummings Lower Drug Costs Now Act
There is a general concern that providers who administer medications in their offices may be left underwater as a result of H.R.3. In time, that would reduce the number of available locations for patients to receive medications that are infused, injected, or otherwise administered by a provider and drive patients to hospital outpatient departments instead. Targeted reforms of Part D such as the out-of-pocket annual cap coupled with a restructuring of the rebate system can reduce the high financial burdens for patients without jeopardizing their access.
To read the full letter, please click here

RNS Responds on State Level

As a resident of your state, you are a constituent to whom elected members of the legislature have a responsibility. Communication with your state legislators and regulators can have a significant effect on healthcare issues. On the state level, regulatory agencies carry out their responsibilities through state health departments, state insurance agencies, state medical and pharmacy boards, and other agencies.

Nebraska: January 8, 2021
The RNS officially signed on in support of Nebraska Legislative Bill (LB) 337: Adopt the Step Therapy Reform Act, submitted by the Nebraska Step Therapy Coalition.
To read the full letter, please click here

Arkansas: January 20, 2021
The RNS submitted letters to members of the Arkansas Senate in support of Senate Bill (SB) 99: Regulate Step Therapy Protocols.
To read the full letter, please click here

Arizona: January 22, 2021
The RNS officially signed on in support of Arizona Senate Bill (SB) 1270: Insurance, Prescription Drugs, Step Therapy submitted by the Arizona Step Therapy Coalition.
To read the full letter, please click here

Nebraska: April 1, 2021
LB 337 (Adopt the Step Therapy Reform Act) was officially signed into law by NE Gov. Ricketts
To read the full letter, please click here

North Carolina & South Carolina: May 5, 2021
The RNS signed on in agreement with both North Carolina and South Carolina regarding Blue Cross Blue Shield (BCBS) coverage policies for pegloticase, an infused therapy for patients with chronic refractory gout.
To read the full NC letter, please click here
To read the full SC letter, please click here

It has been an incredible year, and we look forward to all the ways we are able to continue advocating for our patients in the year to come. Stay updated on how the RNS is advocating for patients and healthcare providers, plus learn how you can get involved by checking out the RNS Action Center.