By Iya Bekondo-Granatella, Founder of the Iya Foundation Inc.

Introduced in 2017, the Dialysis PATIENTS Demonstration Act (H.R. 4143 / S. 2065) is a bill that promises a demonstration program for the provision of integrated care to Medicare beneficiaries with End-Stage Renal Disease (ESRD). In this case, the acronym PATIENTS means Patient Access to Integrated-care, Empowerment, Nephrologists, Treatment, and Services. This bill, pioneered primarily by large dialysis organizations (LDOs), proposes an alleged value based integrative care program that claims patients will experience reduced hospitalization, optimize medical use and efficacy, and improve the overall outcome in the quality of care of patients. Essentially, the bill mandates a new way of delivering care by allowing dialysis organizations to create organizations that are responsible for 100% of services that dialysis patients need with payment on the basis of Medicare Advantage Capitated rates. Although the bill seems fair on the surface, it really is NOT. Not only is it coined to significantly compromise patient access and referral to organ transplantation, it is detrimental to patient centered care, disadvantageous to nonprofit and smaller dialysis organizations, and risks robbing patients of their rights and choices.Therefore, patient centered organizations like the American Association of Kidney Patients, and the Iya Foundation along with top national kidney patient advocacy organizations like the American Society of Nephrology, American Society of Transplantation, American Society of Transplant Surgeons, Association of Organ Procurement Organizations, Dialysis Clinics, Inc., amongst many others OPPOSE this bill. The following are some of the key reasons why these entities OPPOSE the PATIENTS Demonstration Act:

  • Restricts Patient Voice and Choice: based on this bill, patients will be automatically enrolled into an organization, with only 75 days to opt out of it. Unfortunately 75 days is not enough time to make such an important decision for an already traumatized and fragile patient who is probably still dealing with the life changing diagnosis of having to deal with ESRD for the rest of their life. More so, the ability for patients to choose their own providers serves as an added incentive for innovation and improvement in the quality of care delivered by providers. Stripping this power from patients restricts their patient voice and choice.
  • Exacerbate Existing Silos of Care: this bill focuses only on dialysis and does not look at uphill management and slow down progression of chronic kidney disease. It claims to incorporate integrated care but does not include CKD care, palliative care, medical management, and hospice – all of which are critical services. Instead, the program requires that a patient leave the organization if that kind of care is needed.
  • Creates Dis-incentives for Transplantation: transplantation is a highly complex surgical procedure. Under this proposed law, LDOs will be in charge of transplant coordination. The irony in this is that, most of them make more money with patients on dialysis as opposed to transplantation hence there won’t be much incentive for them to recommend transplantation to patients who need it. This is because, for every successful transplant, an Organization’s Medicare payment will be reduced by about $80,000; a massive cut on their profits.
  • Infringe on the Patient-Physician Relationship and Disrupting Care: With this program, patients are assigned specific nephrologists who are part of an organization’s select network. This causes a problem as nephrologists who are not part of these networks, will be prohibited from seeing patients in those units, thereby disrupting the patient-physician relationship and subsequently the quality of care of patients.
  • Risks Eliminating Non-profit and Small Dialysis Providers: Under this act, dialysis organizations will be allowed to acquire or create insurance companies with little or no effort, allowing them to be the at-risk entity of Medicare Advantage Plans. Essentially, they will be allowed to bare full-risk (100%) for the care of ESRD patients or partner with an entity that can. What this kind of capitated risk does is that it puts nonprofits and smaller dialysis providers who cannot come up with 100% of the cost of services to the patients at risk of closing. This also limits patient access to the unique and high quality care often provided by these smaller facilities.

As you can see, the only people who stand to benefit from this bill are Large Dialysis Organizations who clearly did not consider kidney patient needs as a priority. The Iya Foundation Inc. joins the oldest and largest patient centered independent kidney organization, American Association of Kidney Patients, and the nation’s top kidney patient advocacy groups to prevent this bill from going through. Join us by signing the petition here or click on the following link http://aakp.org/action-center/

References from www.aakp.com