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

On 5/23/19 Senators Ben Cardin (D-MD) and Roy Blunt (R-MO) introduced S 1676, The Chronic Kidney Disease Improvement in Research and Treatment Act of 2019, a bill to improve the understanding of, and promote access to treatment for, chronic kidney disease. Introduced in 2017 as HR 2644 by Rep Tom Marino (R-PA), it is promising that this act has been reintroduced.

Passing this act would be a big step in proactive care for people who have kidney disease.  It would allow for significant improvements in critical areas including the following:

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 of 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 people with End-Stage Renal Disease (ESRD) 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 everyone receiving the best care.  For people who need dialysis, information comes from many sources and often there is a communication breakdown.  When someone is admitted to a hospital as an in-patient, his/her 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 people with kidney disease are empowered to understand what is happening with their health, including treatment options, possible outcomes and risks, as well as 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 people with care-planning discussions and ensure they 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.

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