RSN’s Regulatory and Legislative Priorities

Here is RSN’s wish list (in no particular order):

1) Guaranteed Access to Medigap Policies People with ESRD face limitations in accessing Medigap policies. These supplemental insurance policies help cover costs not covered by Medicare. There is currently no “all-inclusive” provision for access to Medigap or supplemental insurance for ESRD patients under the age of 65. Only 31 of the 50 states offer Medigap coverage. Because the ESRD program provides Medicare to people affected by and receiving treatment for renal failure, this leaves people under the age of 65 choosing either to pay potentially huge out-of-pocket costs or to compromise their treatment by picking and choosing what they can afford. This obstacle can financially cripple people living with kidney disease.

ASK: A federal law requirement that all ESRD Medicare recipients have access to Medigap coverage in every state would guarantee that the full range of services required to maintain their health is available to them. Provide guidance to insurance companies so they do not charge higher premiums for supplemental coverage. High premiums are cost prohibitive for people who have ESRD, who are then left without supplemental coverage. This Bill Can Help! Click here to take action.

2) Oral Drugs (Phosphate Lowering Medications) Although dialysis removes phosphorus, it usually does not remove enough, and many people with kidney failure require phosphorus lowering medications. Phosphorus is a preservative and found in high amounts packaged foods. Also, phosphorus is especially in high protein foods, so patients who are trying to increase their albumin may need to take more pills adding to the bill burden. Phosphorus content is not required on FDA food labels.

ASK: Leave phosphate lowering medication out of the bundle system. It is important that doctors be able to prescribe the most effective treatment for their patients. There are hundreds of combinations of medications to affect bone mineral metabolism and they are given at a very high volume. Therefore, they cannot be effectively managed and stocked with efficiency in a dialysis facility or nursing home.  Also, there are no approved quality measures which can protect the patient from receiving the cheapest medication instead of the most effective one. Medicare Advantage plans can use a formulary to start a patient on the cheapest form of a medication regardless of what is prescribed by a physician. These critical distinctions lead us to ask that phosphate binders not be included in the bundle. We believe that doctors should have the freedom to prescribe the best treatment to lower phosphorus for their patient’s specific needs, and that patients can pick up the medication from their pharmacy, so they have the opportunity to speak with a pharmacist. This Bill can Help. Click here to take action.

3) Innovation is Important The current End-Stage Renal Disease (ESRD) bundled payment program has no sustainable means to incentivize and improve kidney care. The bundled per treatment payment includes medications, laboratory services, supplies, staff, and capital-related costs related to furnishing maintenance dialysis.  Improved devices and technology are currently not reimbursed at the rate or percentage for kidney disease as they are for other chronic illnesses. There is no incentive for companies to develop new products or treatments. Currently, there is only a two-year promise of reimbursement to encourage innovation. This is insufficient and sends the signal that people on dialysis are not as important as those with other chronic diseases. We need a reimbursement pathway which allows people who have kidney disease to have access to innovative treatments.

The Transitional Drug Add-on Payment Adjustment (TDAPA) and the Transitional Add-on Payment Adjustment for New and Innovative Equipment and Supplies (TPNIES) provide reimbursement for new products in traditional Medicare (not required in Medicare Advantage).

ASK: Payment drives practice. The ESRD payment system must provide long-term payment mechanisms which adjust the bundle when new products become available. To force innovation to be reliant on a short window of time and is unrealistic and a hindrance to an increase in new innovative therapies and technology to improve care for people who have kidney failure.  

4) Organ Procurement and Transplantation Network (OPTN) Modernization Initiative The Health Resources and Services Administration (HRSA) is taking significant steps to improve the US transplant system through its Organ Procurement and Transplantation Network (OPTN) Modernization Initiative. This includes enhancing transparency, performance, governance, and efficiency. In the past, a single vendor (UNOS) managed all aspects of the OPTN, but now HRSA is soliciting proposals from multiple vendors to increase competition and provide the best services for patients and their families.

The OPTN system is very outdated and is not working as efficiently as needed and causing series problems. To fix the OPTN system it requires Congress to allocate funds, with estimates suggesting a cost of up to $100 million dollars.

ASK: Advocate for improving the organ allocation system by allocating the needed funds to update the OPTN. Also, minimize conflicts, and recognizing that surgery is only the beginning for organ recipients. Prevent the sale of tissue and bones by private companies, redirecting these resources to support people in need of organ transplants by providing education and resources. The goal is to ensure that recipients can maintain their gift of life. 

5) Living Donor Protections The Living Donor Protection Act of 2023 (H.R. 2923) will promote and protect living organ donation. If passed, this bill would prohibit discrimination of living organ donors by employers, life insurance providers, disability and long-term care insurance carriers. Click here to take action on this legislation.

Living Organ Donor Tax Credit Act, H.R.6171 If passed, this bill would provide a $5,000 tax credit to help relieve financial barriers to living kidney donation.

ASK: Tell Congress to Pass the Living Donor Protection Act that would prevent discrimination of living organ donors and the Living Donor Tax Credit to help the heroes who donate a kidney who save people’s lives. Click here to take action on this legislation.

6) Restore Protections for Dialysis Patients Act H.R. 6860 Support this bill to restore the intended protections and ensure that people who have kidney failure can make informed choices about their healthcare coverage without facing pressure from their group health plan to shift to Medicare prematurely.

ASK: This legislation will restore the intended protections and ensure that people who have this disease can make informed choices about their healthcare coverage without facing pressure from their group health plan to shift to Medicare. H.R. 6860 is not a mandate but aims to restore the protections that Congress originally intended for people with kidney failure. Click here to take action on this legislation.

7) Healthcare Professional Shortage We know there is a critical healthcare shortage which has been greatly exacerbated by the demands of the pandemic. Sadly, the number of medical graduates entering the nephrology specialty has declined by nearly 50 percent. Similarly, the number of nurses trained in nephrology care is decreasing. Since quality kidney care largely depends on quality staff, it is imperative we look for both short- and long-term solutions. Moreover, the pandemic has led many health care professionals to leave their jobs. Providers find it difficult to find nurses and technicians to staff their facilities, especially when Medicare rates have not increased to reflect the increasing cost of hiring workers.  Doctors are choosing other fields where they can provide more resources.

ASK: There is a significant shortage of healthcare professionals especially in kidney care, and we need to find ways to encourage more people to choose careers in healthcare. Lives depend on it.


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