Patient Voice. Patient Choice.

Who We Are

The American Association of Kidney Patients (AAKP) is the oldest and largest kidney patient education and advocacy organization in the nation. AAKP proudly represents the largest base of patient consumers, families, organ donors, and care partners in the kidney space.

What We Do

Founded in 1969 by six kidney patients, AAKP has always been a patient-led organization. We educate patients and policymakers on the need for greater investments and innovations in kidney disease research, detection, and treatment. We are know nationwide and across the globe for our aggressive advocacy on behalf of kidney patient consumers and their right to treatment care choice, in consultation with the doctors who they choose to care for them.

We Believe

AAKP defines high-quality kidney care as timely patient access, without interference, to innovations that help prevent and treat diseases, and empower patients to remain healthy, independent, and better able to pursue their aspirations - including meaningful full-time or part-time work and a career; home ownership; starting and supporting a family; and a secure retirement.

Why the Right to Kidney Patient Consumer Care Choice and Timely Access are Critical for ALL Patients

Kidney disease has an incredibly alarming and growing impact on Americans and their families, and a disproportionate impact across   minority communities. The human burdens and costs to patients, their families, and the American taxpayer are immense. The AAKP Patient Voice, Patient Choice™ initiative mobilizes those impacted by kidney diseases by engaging them in ways that are most effective in elevating their voice in the policy and payment decisions that impact the access to new diagnostics, drugs, and devices that can improve and save their lives. This includes critical times when barriers are created by national legislation, health program implementation, regulations, or payment decisions by government or insurance companies.

The Patient Voice, Patient Choice™ initiative provides an interactive platform patients and care partners can use to quickly identify current issues impacting care choice and treatment.

You can engage with elected leaders, government agencies, and payers to raise your voice when timely access to FDA-approved treatment(s) and devices, determined to be medically beneficial and safe between doctors and their patients, is a priority.

This AAKP-led initiative aims to eliminate the unnecessary interference when artificial barriers or delays threaten patient access or threaten your right to patient consumer choice. 

AAKP fights for kidney innovations that slow progression of kidney disease, reduce kidney failure, and decrease the number of Americans who may end up on dialysis or the kidney transplant waiting list.

Join the fight by lending your voice in support of fellow patients who can benefit from greater access!

AAKP Patient Voice, Patient Choice™ Campaigns

United, We Can Ensure  Patient Choice and Access are Timely! 

Chronic Kidney Disease Associated Pruritus (CKD-aP)

What Is It And Is There A Treatment?

CKD-aP is defined as moderate to severe itching that is directly related to kidney disease. It is most common in dialysis patients, estimated at impacting 30-70% of patients. An effective U.S. Food and Drug Administration (FDA) approved treatment exists, but long-term coverage by Medicare is at risk.

Learn More

What Is The Barrier To Access This Treatment?

Korsuva is the first and only therapy approved by the FDA for the treatment of pruritus associated with chronic kidney disease (CKD) in adults undergoing hemodialysis, but long-term coverage by Medicare is at risk. To ensure that this FDA approved treatment is available to as many patients, when deemed appropriate by the patient in consultation with their healthcare team, the Center for Medicare and Medcaid Services (CMS) must hear from you!

The End Stage Kidney Disease (ESRD) Transitional Add-on Payment Adjustment (TDAPA) program was created by CMS as a means of ensuring patients like you, suffering from CKD, have patient consumer choice and access to the latest innovations and treatments that are FDA approved. It is, however, an imperfect system, as for some new treatments, patient access and reimbursement are only guaranteed for a limited time. Uncertainly around long-term reimbursement, once the TDAPA period expires, leads to significant barriers to patient consumer access because healthcare providers may be hesitant to prescribe a new, innovative drug knowing that once reimbursement changes in a few years, their patients will have difficulty accessing it and may ultimately stop their effective treatment plan. Not only is this barrier unacceptable, but also causes and exacerbates health inequities and disparate care to vulnerable patients and minority communities.

Learn What You Can Do To Help Knock Down This Barrier To Patient Care Choice And Access

To truly support CKD patients and act on their promises about health equity, CMS must clarify the long-term reimbursement for all TDAPA-eligible drugs. Take Action by contacting CMS today!

Submit a CKD-aP Access Letter to CMS

Submit a CKD-aP Access Letter to Your Congressional Representatives

Sign AAKP's Patient Voice Patient Choice Petition for Access to FDA Approved Treatments

Additional CKD-aP Resources 

  • CKD-aP Patient Education (Web page)
  • Pocket Guide to Understanding CKD-aP (Download)
  • AAKP HealthLine Webinar - Stop the Itch: Understanding & Managing CKD-aP (Watch OnDemand)

 

Expanded Hemodialysis (HDx) Therapy – Bring Innovation to Dialysis Care!

What Is It And Is There A Treatment?

Theranova is a new class of dialyzer that can remove an expanded range of harmful toxins from the patients blood during hemodialysis treatment – referred to as Expanded Hemodialysis (HDx) therapy.[1]

This new dialyzer fits on existing hemodialysis machines. Based on clinical evidence, these toxins are linked to increased inflammation, cardiovascular disease, and other adverse outcomes that put dialysis patients’ health at further risk. Studies have shown that Theranova is associated with a range of quality-of-life improvements, such as decreased itching and restless leg syndrome, reduced recovery time after a dialysis session, and decreased hospitalization. Conventional hemodialyzers, including low- and high-flux dialyzers have limited ability to remove this expanded range of harmful toxins, unfortunately leaving these toxins in the patient’s bloodstream. 

What is the barrier to access this treatment device?

AAKP is a champion for global innovation in kidney care. Theranova is now available in 54 countries around the world – yet, while it is available in the United States, patient access to this FDA-approved innovation is severely limited.

To ensure increased access for more dialysis patients, when deemed appropriate by the patient in full consultation with their healthcare team, the Center for Medicare and Medicaid Services (CMS) must hear from you!

CMS created the End Stage Kidney Disease (ESKD) Transitional Add-on Payment Adjustment for New and Innovative Equipment and Supplies (TPINES) program as a means of ensuring that patients like you, suffering from kidney failure, have patient consumer choice and access to the latest innovations and devices that are FDA approved.

However, the CMS program TPINES program is an imperfect system.  For some new treatments, patient access and reimbursement are only guaranteed for a very limited time. Uncertainty around long-term payments for innovations, like Theranova, after the TPINES period expires creates a massive barrier to patient consumer access. Healthcare and dialysis providers may hesitate to offer a new, innovative dialysis treatment due to their fears that reimbursement will change in a few years, thus the availability of Theranova will be reduced. AAKP believes this uncertainty and barrier is unacceptable and further exacerbates health inequities among vulnerable patients and minority communities.

Learn what you can do to help knock down this barrier to patient care choice and access

CMS has asked the general public to comment on the new Theranova dialyzer. AAKP believes this is an opportunity to make your voice heard on whether patients should gain greater access to these new innovations.

Together, we can achieve another victory for dialysis patients! Just last year, patients like you raised their voice to support a new home hemodialysis device that was approved for TPINES! By demanding choice and access to a new device innovations, together we demonstrated that the independent patient voice matters and can initiate positive change regarding healthcare policy decisions that impact patient care.

Submit a Theranova HDx Access Letter to CMS

Additional HDx Therapy Resources

[1] As demonstrated in THERANOVA’s Investigational Device Exemption (IDE) trial, THERANOVA removes this expanded range of toxins while maintaining essential blood proteins.  The IDE study was a randomized, controlled clinical trial in which 172 Medicare patients received hemodialysis therapy with either the THERANOVA 400 dialyzer or a high-flux dialyzer over 24 weeks of treatment and found that HDx therapy with THERANOVA provides statistically significant and enhanced removal of the identified toxins while maintaining serum albumin levels in the blood. See Weiner D, et al., Efficacy and Safety of Expanded Hemodialysis with the Theranova 400 Dialyzer: A Randomized Controlled Trial. Clinical Journal of the American Society of Nephrology. Open Access. DOI:  doi.org/10.2215/CJN.01210120.

Chronic Kidney Disease Associated with Type 2 Diabetes

What Is It And Is There A Treatment?

Diabetes is a leading cause of chronic kidney disease (CKD). Early diagnosis of CKD and appropriate management of co-morbid conditions that impact the kidneys is crucial in helping patients reduce the risk of end stage kidney disease (ESKD) – which leads to the need for kidney replacement therapy (KRT) such as dialysis or transplantation. An effective U.S. Food and Drug Administration (FDA) approved treatment exists, but patient access is at risk.

What Is The Barrier To Access This Treatment?

Kerendia is a therapy approved by the FDA that is proven to slow the progression of CKD in adults with Type 2 Diabetes, but many  insurance companies are denying coverage or implementing artificial barriers and/or delays to this treatment – such as step therapy or the arduous task of making a patient and their physician go through a medical authorization process to prescribe the treatment, only to be denied again by the insurance company.

Learn What YOU Can Do To Help Knock Down This Barrier To Patient Care Choice And Access

To truly support CKD patients and act on their promises about the importance of preventive health and the elimination of health inequities and disparate care, insurance companies must provide open access to all new and innovative treatments, that are FDA approved. Take Action by contacting CMS today, share your independent patient voice on what it means to have choice and access to live-saving treatments without the artificial barriers insurance companies are putting in place!

Submit an Access Letter to CMS - Coming Soon!

Sign AAKP's Patient Voice Patient Choice Patient for Access to FDA Approved Treatments

Additional Diabetic Kidney Disease (DKD) Resources 

  • Learn more about how diabetes impacts the kidneys (Click Here)
  • Learn more about innovations in managing chronic kidney disease caused by type 2 diabetes, also known as diabetic kidney disease (DKD)
    Staying Healthy with Diabetes (Watch OnDemand)
    Kidney Disease Management and Pre-Emptive Treatments for Diabetic Kidney Disease (Watch OnDemand)
  • Download AAKP’s Pocket Guide to Managing Kidney Disease. Includes top questions to ask your physician at each stage of CKD (Download Brochure)
  • AAKP Patient Impact Statement: FDA Approval of Kerendia to Help Slow Kidney Disease and Failure Associated with Type 2 Diabetes (Read Now)

Iron Deficiency Anemia in Chronic Kidney Disease (CKD) Patients

What is it and is there a treatment?

Anemia is a prevalent and serious condition in patients with CKD, and is associated with fatigue, reduced health-related quality of life, progression of disease and higher mortality.  Yet, the only treatments available to Medicare beneficiaries are intravenous (IV) products they must obtain in hospitals or infusion centers. Medicare beneficiaries with kidney diseases are also disproportionately African American, Hispanic, Native American, Asian, and Pacific Island American because of the higher prevalence of kidney disease among these minority populations. An effective U.S. Food and Drug Administration (FDA) approved treatment exists, but access is not available for Medicare beneficiaries.

What is the barrier to access this treatment?

Auryxia is the first and only oral iron treatment approved by the FDA for the treatment of iron deficiency anemia in adults with CKD, not on dialysis. To ensure this FDA approved treatment is available to all patients, when deemed appropriate by the patient in consultation with their healthcare team, the Centers for Medicare and Medicaid Services (CMS) must hear from you!

Despite widespread coverage by other government and commercial payers, Medicare does not provide coverage for oral drugs that are approved by the FDA to treat iron deficiency anemia in patients with CKD.  Not only is this barrier unacceptable, it causes and exacerbates health inequities and disparate care to vulnerable patients and minority communities. It’s estimated that about 16% of the total Medicare population are minority Americans, with more than half of that minority population being African Americans, with Latinos making up the next largest group.

Learn what you can do to help knock down this barrier to patient choice and access 

To truly support Medicare patients and act on their promises about health equity, CMS must ensure equitable access to the proper care for vulnerable kidney patients by providing access to FDA approved oral treatments for anemia. Take Action by contacting CMS today!

Sign AAKP's Patient Voice Patient Choice Petition on Access to FDA Approved Treatments

Submit an Oral Anemia Access Letter to CMS - Coming Soon!

ADDITIONAL RESOURCES

  • HHS Announces Kidney Care Awareness Campaign, Some Want More (Read Now)
  • Akebia sues after CMS removes Auryxia from Medicare Part D coverage (Read Now)
  • Medicare’s Denial of Coverage to Kidney Patients Could Be Just the Beginning (Read Now)
  • AAKP Policy Summit: Advancements in Anemia and the Call for Complete Patient Access – John Butler, President & CEO, Akebia Therapeutics, Inc. (Watch OnDemand)

Secondary Hyperparathyroidism (SPHT)

What Is It And Is There A Treatment?

SPHT is the medical condition of excessive secretion of parathyroid hormone (PTH) by the parathyroid glands and can cause bone disease and calcium to build up in tissues and organs such as the heart and blood vessels. SPHT is most commonly found in end stage kidney disease (ESKD) patients who receive dialysis for their kidney failure. Approximately 30 percent of all dialysis patients develop this condition. African Americans with kidney disease have more severe SPHT than Whites. An effective U.S. Food and Drug Administration (FDA) approved treatment exists, but access is at risk.

What Is The Barrier To Access This Treatment?

Parsabiv is the first and only intravenous (IV) calcimimetic approved by the FDA for the treatment of SPHT for individuals on hemodialysis. To ensure this FDA approved treatment is available to all patients, when deemed appropriate by the patient in consultation with their healthcare team, the Centers for Medicare and Medicaid Services (CMS) must hear from you!

The End Stage Kidney Disease (ESRD) Transitional Add-on Payment Adjustment (TDAPA) program was created by CMS as a means of ensuring patients like you, suffering from CKD, have patient consumer choice and access to the latest innovations and treatments that are FDA approved. It is, however, an imperfect system, as for some new treatments, patient access and reimbursement are only guaranteed for a limited time. Uncertainly around long-term reimbursement, once the TDAPA period expires, leads to significant barriers to patient consumer access because healthcare providers may be hesitant to prescribe a new, innovative drug knowing that once reimbursement changes in a few years, their patients will have difficulty accessing it and may ultimately stop their effective treatment plan or, in this case of IV calcimimetics, dialysis providers have changed policies for use of IV calcimimetics once the TDAPA period ended, causing vulnerable patients to go through fail-first protocols (step therapy) by giving or returning them to oral generic drugs to see if the newer IV calcimimetic is needed, even when patients – prior to the expiration of TDAPA – have already failed on the oral therapy or are intolerant to it. Not only is this barrier unacceptable, it disrupts the patient/physician relationship when there is continuity of care that has stabilized the patients SPHT, and causes and exacerbates health inequities and disparate care to vulnerable patients and minority communities.

Learn What You Can Do To Help Knock Down This Barrier To Patient Care Choice And Access

To truly support CKD patients and act on their promises about health equity, CMS must investigate how this dialysis payment change is being implemented by dialysis providers to learn how it is impacting patients with the investigational goal of ensuring equitable access to the proper care for vulnerable kidney patients. Take Action by contacting CMS today!

Sign AAKP's Patient Voice Patient Choice Petition for Access to FDA Approved Treatments

Submit an IV Calcimetics Access Letter to CMS - Coming Soon!

ADDITIONAL RESOURCES

  • AAKP Medical Alert: Understanding SPHT, its Treatment, and Possible Treatment Changes (Watch OnDemand)
  • Questions to Ask Your Doctor about SPHD and its Treatments (Download)
  • AAKP Patient Impact Letter Re : Calcimimetics (Read Now)