Legislative Positions

Tracking Federal Legislation Impacting the Patient Community

Patients Rising Now developed a Legislative Positions Chart to track federal legislation impacting the patient community and the healthcare landscape at large. The purpose of this chart is to help everyone understand PRN’s position on legislation. 

To date, 14,198 bills have been introduced in the 117th Congress. The Patients Rising Now team analyzed all of the legislation (excluding Amendments and Resolutions) introduced in the House of Representatives  and the U.S. Senate in an effort to determine the effect of each bill on the patient community. Beyond any legislation that would broadly impact the patient community, legislative importance was prioritized if the bill will help or harm patients. In total, the chart covers 636 specific bills introduced this Congress.

Patients Rising Now welcomes comments or questions regarding the 117th Congress Legislative Positions Chart. If you have any feedback you’d like to offer, please contact Patients Rising Now Executive Director, Rachel Derby (rachel@patientsrising.org) or Manager of Government Affairs, Davis Hagigh (davis@patientsrisingnow.org).


Understanding the Legislative Positions Chart

Due to the large volume of legislation being synthesized for the patient community, Patients Rising Now organized the Legislative Positions Chart  by our three policy pillars; access, affordability and transparency. To further focus organization of the 636 bills, information is also divided into subcategories.   

Category: Access, Affordability, and Transparency.

Access: The default setting of the U.S. healthcare system should be getting the right treatment to the right patient at the right time. Patients experience delays and roadblocks in treatment. 

Affordability: Policy solutions that will lower out of pocket costs for all Americans. These solutions ensure affordability to all patients, especially the most vulnerable: those with rare or chronic conditions, the underserved, the indigent, and the elderly.  

Transparency: Patients should be afforded the fundamental right of fair and transparent healthcare pricing. All patient out of pocket cost expectations should be shared with patients and their families upfront. Any discounts and rebates received by pharmacy benefit managers (PBMs) should be disclosed and shared with the patients for whom such savings were intended.

Subcategory: Agency, Biosimilars, Cancer, Chronic Disease, Drug Pricing, Health Equity, Health Plans/Insurance, Health Savings Account, Health Services, Kidney, Medical Devices, Miscellaneous, Rare Disease, Research, Seniors, Telehealth, and Veterans. 

Agency: The bills on the Agency Sheet are pieces of legislation that affect any of the Federal Agencies that regulate or manage health (HHS, FDA, CDC, etc.). The bills listed will change regulatory practices, direct an agency to do something (conduct a study, for example), enforce federal rules, and more.

Biosimilars: Legislation that would change the biosimilars landscape to increase access to biosimilars, advance education on biosimilars, change designations of biosimilars, and more.

Cancer: Addresses cancer and the patient experience when they’re diagnosed. There are measures on this sheet that increase access to screenings and tests, eliminate waiting periods, remove cost-sharing requirements, increase research efforts, and more.

Chronic Conditions: The bills on the Chronic chart deal with insurance-related issues, specific diseases (such as osteoporosis and asthma), issuing grants to increase caregiver access, increasing research on certain chronic conditions, protecting access to coverage for chronic patients, and more.

Drug Pricing: Legislation that addresses drug and other healthcare costs. The bills for this issue area increase transparency, ensure enforcement of certain Federal Rules, increase patient access to information on treatments, initiate new guidelines for Federal health programs, and more.

Health Equity: Health Equity legislation that improves patient access to care. The bills include provisions to increase diversity in clinical trials, protect patients with pre-existing conditions, study social determinants of health, assist rural patients, and more.

Health Plans/Insurance: Problems patients encounter when dealing with their health plan and other similar programs. These bills include increasing funding for Medicaid, allowing patients to deduct premiums from their taxes, increasing transparency, preventing surprise billing, and more.

Health Savings Account: Legislation that incentivizes and regulates the way people use a health savings account, which is a method where people can save pre-tax money to be used for health-related expenses such as deductibles and copays.

Health Services: Legislation that deals with hospitals and providers. This includes increased transparency for hospital prices and health services like PBMs, mandating hospital staff to patient ratios, increasing access to specialist doctors, removing barriers to treatment like prior authorization and step therapy, and more.

Kidney: Legislation that helps patients whose health issues originate in their kidneys and the problems they encounter when seeking care. The bills include provisions to increase equity in kidney access, increasing access for all patients, preventing kidney disease/failure, increasing access to new treatments, various insulin bills, and more.

Medical Devices: Legislation that deals with the devices that patients need for care. This includes accessing new types of devices, introducing new pathways for innovative devices to reach patients, ensuring patient safety with regard to older devices, and more.

Miscellaneous: Legislation that doesn’t already have a devoted subcategory, but is still important to keep track of for patients.

Rare Disease: Legislation that helps patients with rare diseases. The sheet includes accelerated approval bills, bills for specific disease states, research grant bills, bills to provide coverage for rare disease patients, and more.

Research: Legislation that increases research efforts for areas not covered in previous subcategory sheets. The bills include establishing the ARPA-H program, research opportunities for specific diseases, and more.

Seniors: Legislation that helps seniors. These bills address prior authorization concerns, increasing medicare access, increasing medigap coverage, helping seniors who need chronic care, nursing home and home health assistance, Medicare and other 65+ coverage issues, and more.

Telehealth: Legislation that impacts telehealth. Several of these bills seek to extend or make permanent the pandemic-era provisions that increased telehealth access. But, many of them also allow for certain forms of healthcare to be delivered via telehealth and make special accommodations for patients who need them.

Veterans: Veterans Affairs health topics that increase access for rural veterans, access to cancer screening, preventing copay overpayment, constructing new and renovating old VA facilities, and more.

Please note, some bills may cover more than one of these areas (for example, a Veterans Affairs bill that helps servicemen and women with cancer); organizing the bills is a matter of ‘best fit’ (while the previous example is certainly a cancer bill, it’s a better fit in the Veterans sheet). 


Patients Rising Now Positions 

Patients Rising Now positions fall under these categories: support, support, oppose and monitor. Bold support indicates active engagement. 

If Patients Rising Now is supportive of legislation, then the organization is willing to be on record with this position. If Patients Rising Now is opposed to a bill, the association will work to stop the legislation from advancing beyond introduction. A majority of the legislation is denoted as monitoring: meaning the association is actively tracking the bill and its potential to be considered by Congress. 

Additionally, the chart also details who introduced the legislation (including their state and political background), cosponsorship, most recent legislative action, bill title, whether or not there  is a ‘companion bill,’ and a brief description of the bill. Even though bills can be sponsored or ‘introduced’ by multiple Members of Congress, only one Member can officially submit the bill and the sheets reflect the official submission.