The Chronic Kidney Disease Improvement in Research and Treatment Act of 2019 (S. 1676, H.R. 3912)

The bipartisan Chronic Kidney Disease Improvement in Research and Treatment Act of 2019 (S.1676 and H.R. 3912) was introduced by Senators Benjamin Cardin (D-MD) and Roy Blunt (R-MO) and Representatives John Lewis (D-GA5) and Vern Buchanan (R-FL16). If passed, this legislation will help millions of individuals living with chronic kidney disease and ESRD achieve the quality of life they want and deserve.

Specifically, the legislation does the following:

  • Medigap available to all ESRD Medicare beneficiaries, regardless of age.
  • Improve care coordination for people on dialysis by requiring hospitals to provide an individual’s health and treatment information to their renal dialysis facility upon their discharge. The individual or dialysis facility may initiate the request.
  • Increase awareness, expand preventative services, and improve coordination of the Medicare Kidney Disease Education program by allowing dialysis facilities to provide kidney disease education service. And it will allow physician assistants, nurse practitioners, and clinical nurse specialists, in addition to physicians, to refer patients to the program. And additionally, provide access to these services to Medicare beneficiaries with Stage 5 (CKD) not yet on dialysis.
  • Incentivize innovation for cutting-edge new drugs, biologicals, devices, and other technologies by maintaining an economically stable dialysis infrastructure. The Secretary would be required to establish a process for identifying and determining appropriate payment amounts for incorporating new devices and technologies into the bundle.
  • Improve the accuracy and transparency of ESRD Quality Programs so patients can make better decisions about their care providers.
  • Improve patient understanding of palliative care usage as well as access to palliative care services in underserved areas.
  • Allow individuals with kidney failure to retain access to private insurance plans as their primary payor for 42 months, allowing people to keep their private plans longer.

Details in this Bill

Increase the Number of Nephrologists and Improve Access to Care in Underserved Areas
The kidney community has been dealing with a lack of nephrologists for years.  Without enough nephrologists to care for the fast-growing population people who have kidney disease, there will be more patients doing poorly due to the lack of available doctors to care for them.  This will lead to more hospitalizations and an earlier need for dialysis.

Access to Medigap for all End Stage Renal Patients
Though Medicare covers most costs associated with care, the patient is also responsible for a portion.  Many people who have limited incomes are having to pay deductibles and co-pays not covered by Medicare and that causes significant financial strain.  Medigap is private insurance that fills in the gaps between Medicare benefits and what patients have to pay out-of-pocket.  Currently only 28 states offer Medigap coverage to ESRD patients under the age of 65.  Therefore, some patients under 65 are forced to do what is necessary to become eligible for Medicaid/Medical coverage, which can often cripple them financially.  Reduced need for Medicaid will save the state and taxpayers money in the end as well.

Increased Access to Medicare Education Benefit
Medicare covers six (6) one-hour sessions of kidney disease education by a doctor or qualified nurse/nurse practitioner/social worker if you have stage 4 Chronic Kidney Disease or End-Stage Renal Disease and qualify based on established criteria.  Education is critical to navigate this disease so there needs to be additional access to all patients at various stages, and increased education covered by Medicare.  There has been a decline in patients using this benefit since its inception in 2012.  This may be due to a few factors including: many smaller centers don’t have the staff to run the classes, for many it’s not cost-effective for them to do so due to limited Medicare reimbursement, and many patients aren’t informed about classes because many doctors don’t have information about them.  It’s necessary to have patients educated on what to expect and how to care for themselves once they are on dialysis or as they plan for transplant.  With an increase in funding, improvement in education will benefit the whole healthcare system in the long run.

Provide Coverage for Palliative Care
Often hospice and palliative care are confused, but while hospice care is compassionate care for patients who have a pre-determined limited lifespan, palliative care is compassionate care that can start as early as diagnosis.  It can occur anytime during the span of an illness through end of life.  Medicare generally covers 100% of hospice care but palliative care is paid for by private insurance or the patient themselves.  People who have kidney disease are often burdened by mental and emotional issues in addition to their physical condition, which can lead to insufficient treatment resulting in unforeseen medical setbacks.  Palliative coverage would allow for care that aids in avoiding these setbacks for patients.

Information Sharing Between Hospitals and Dialysis Centers
Communication is key when it comes to every patient receiving the best care.  For people who need dialysis, information comes from many sources and often there is a communication breakdown.  When a patient is admitted to a hospital as an in-patient, their dialysis center doesn’t always receive all the information needed.  This is often due to the dialysis center not receiving admitting or discharge information, incompatible electronic records systems, different priorities and lack of standardized content.  If everyone is in the know, adverse events like medication mismanagement and readmittance can be greatly reduced and patient care improved.

Incentivizing Innovative Technology
Statistics continually show that research and technological advancements in chronic disease care improve the lives of people who have an illness and lower the financial burden for patients and taxpayers.  However, innovative devices and technology are not reimbursed at the rate or percentage for kidney disease as they are for other chronic illnesses, so there is a lack of incentive to spend time researching new technology for the kidney world.  We have seen firsthand how changes in care, like dialysis machine upgrades and medication improvements, have improved treatment outcomes for people who need them to survive.  Advances in biological sciences, coupled with the increasing availability of clinical data from electronic medical records, as well as improved medical imaging, offer many options for medical advances.

Increase Transparency
Transparency in healthcare is paramount in this modern era.  Public policy changes and the growing number of health care quality information sources suggest that patient access to information regarding safety, quality, and outcomes is becoming increasingly important to patients who want to be actively involved in their treatment.  When patients are empowered to understand what is happening with their health, including treatment options, possible outcomes and risks and costs, everyone benefits.

Healthcare providers must provide as much information as possible to ensure safe, quality care so patients, in conjunction with their healthcare team, can make informed decisions.  Healthcare providers also need to engage patients with care-planning discussions and ensure patients and their families are vested in decision-making.  Additionally, internal transparency leads to improved external transparency so healthcare providers need to assist each other with that.  Using the increasing number of electronic record portals to consolidate information coming from various healthcare sources and being reachable through portals or email is extremely useful to keep patients informed.

Read the letter by Senators Benjamin Cardin (D-MD) and Roy Blunt (R-MO)

Read the letter by Senators John Lewis (D-GA) and Vern Buchanan (R-FL)

Track this bill’s progress

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