Chronic kidney disease (CKD) affects more than 30 million Americans. It causes more deaths than breast cancer or prostate cancer and, approximately 90% of those with kidney disease don’t even know they have it. The best treatment is early detection so that CKD can be slowed or stopped. Early treatment includes diet, exercise, and medications. However, once kidneys fail, treatment with dialysis or a kidney transplant is needed to survive.
Nearly 680,000 Americans have irreversible kidney failure, or end-stage renal disease (ESRD), and need dialysis or a kidney transplant. More than 475,000 ESRD patients receive dialysis at least three times per week to replace kidney function. Nearly 100,000 Americans are on the waitlist for a kidney transplant right now. Depending on where a patient lives, the average wait time for a kidney transplant can be upwards of three to seven years.
The National Kidney Foundation is calling on Congress and the Administration to make organ transplantation a top priority and has identified several critical areas to be addressed from a legislative and regulatory standpoint. These priorities will create a strategic and effective path forward towards increasing the number of kidney transplants and decreasing the number of patients who die waiting.
1. Living Donation
a. Expand financial assistance offered to living organ donors to cover all expenses related to organ donation including lost wages; travel expenses including transportation, lodging and food; child care or dependent care expenses incurred during the donor’s recovery; living donor medical care and follow-up care for donation; paperwork or legal costs related to the donation; and other expenses related to the donation.
b. Pass the Living Donor Protection Act to ensure job protections for organ donors who need to take medical leave to recover from organ donation surgery and insurance protections, so organ donors are not denied or charged higher premiums because they donated an organ.
c. Support community-based programs, like the National Kidney Foundation’s THE BIG ASK: THE BIG GIVE, that seek to educate kidney patients and potential kidney donors on the benefits and risks of living donation.
2. Medicare and Medicaid Reimbursement
a. Align Medicare and Medicaid reimbursement to healthcare providers to encourage earlier care of CKD patients and preemptive transplants for those who do progress to ESRD.
3. The National Kidney Foundation has recommended a demonstration program to the Centers for Medicare and Medicaid Innovation that would take a patient-centered approach to testing changes in payment and care delivery.
a. This program would put an emphasis on decreasing the demand for organs by preventing or slowing progression of kidney disease. For those who do progress to kidney failure, it would increase the number of people who receive a kidney transplant, ideally before ever needing to start dialysis.
4. Permanently extend Medicare coverage of immunosuppressive drugs for kidney transplant recipients
a. Currently, patients only receive Medicare coverage for 36 months post-transplant. Permanently extending Medicare coverage of immunosuppressive drugs for the life of a transplant is critically important. It will enable recipients to receive immunosuppressive drugs that they are required to take daily to help reduce the likelihood of organ rejection. For many patients the costs associated with immunosuppressive drugs are prohibitive, leading patients to skip doses and risk organ rejection, or, in many instances, not trying to get a transplant.
5. Reduce the discard of kidneys that could be used to provide better outcomes and quality of life for patients
a. Changes to transplant program metrics used by Organ Procurement and Transplantation Network (OPTN)
• Unfortunately, it is not possible to accurately predict how well an organ will perform. Further research into this area of organ performance is needed.
• NKF is advocating to remove use of high-risk kidneys from this metric and to develop a patient quality of life metric one-year post graft survival.
• The current metric of observed to expected survival of graft for one year has high performance, but the perception is that this metric has the unintended consequence of causing overly conservative behavior when evaluating high risk kidneys leading to the discard of organs that could give someone greater quality of life in the short and long-term.
b. Increase transparency and patient-shared decision making in organ offers made to patients. Currently patient consent, at the time of transplant listing, is required for accepting kidneys with a high kidney donor profile index or kidneys that are HIV and/or Hepatitis C positive. Patients still have the right to refuse such an organ when an offer comes. However, patients may not be informed of all organ offers of high-risk kidneys leaving it to the transplant surgeon (or the program’s representative) to make the sole decision on whether the organ is suitable. NKF believes patients should be informed of all offers.
c. OPTN should identify transplant programs that never or very rarely accept high risk kidneys and make changes to the kidney allocation policy to allow Organ Procurement Organizations to direct donations of high-risk kidneys to programs that are most likely to use them. Transplant programs which do not use these organs can voluntarily opt out of the allocation process for these kidneys. Disclosure of the transplant program’s decision to opt out or a transplant program that is bypassed due to the likelihood it will not accept a high-risk kidney must be communicated to patients for patients to determine if alternate listing at another less risk averse transplant program is necessary.
d. OPTN should develop a standardized process that all transplant programs and donor hospitals must follow to determine their genuine interest in viability of an organ offer to accelerate the time the kidney is out of the body and in cold storage. This includes standardization on how to conduct a biopsy when a transplant program requires one and how to obtain and review photos of the organ for the transplant program to determine usability prior to accepting allocation. This also includes the need for trained pathologists to interpret and report the results of deceased donor kidney biopsies at the time of organ retrieval.
e. Change the kidney allocation policy to require each OPO to have at least three back-up transplant programs ready to accept the kidney if the first program declines. This will reduce the time the kidney is out of the body and in cold storage, which decreases the quality of the organ putting it at greater risk of wastage.
f. Changes to Medicare reimbursement should be made to allow for higher risk adjusted payment when a high-risk kidney is transplanted. There is additional cost to the transplant program in transplanting these organs and therefore reimbursement should be adjusted as well. This would remove one barrier to better use of high-risk kidneys.
Dear Florida Kidney Community Members and Friends,
The year in review:
2017 has been a year of change and evolution for our organization. We celebrated Kidney Day in February and have a second opportunity on October 24-25th to bring our message and mission back to AHCA and Florida’s lawmakers. In addition to Kidney Day, the volunteer board of FRAA attended and provided support for several kidney community partners; FSN, AAKP, NKFF and Network 7 invited FRAA to participate in their meetings and events.
Our 44th annual educational conference, held every July, was a great success and we expanded our program and CEU offerings to incorporate required units for our nursing and social work members. So if you are looking for an alternative to replace the Annual Network 7 Conference CEUs we hope you will visit our website and register for the 2018 45th Annual FRAA Educational Conference!
At this year’s meeting we celebrated excellence in the care of patients through our annual Maureen Michael and Mark Zawiski scholarship awards. These awards are given out each year to recognize individuals who have demonstrated leadership and patient advocacy at the highest level. These are peer driven nominations and serve to recognize those who follow in Maureen and Mark’s footsteps to strive for the highest quality patient care and to educate the community and lawmakers about our kidney community.
The 2017 Maureen Michael award went to Rachel Curry, Senior Financial Service Advisor for US Renal Care.
The 2017 Mark Zawiski award went to Allison Vinson, Regional Lead Social Worker for Fresenius Kidney Care.
Each award winner received a cash prize of $500.00 and a full registration for the 2018 FRAA 45th Educational Conference. Please help us congratulate these truly caring kidney community leaders!
Making Room for the Future:
This year we also celebrated the long careers of three of our members: Bob Winston (DaVita), Brenda Tilley (Central Florida Kidney Centers) and Robert “Bobby the Lobby” Reynolds.
Bob Winston and Brenda Tilley have served the membership of FRAA and the kidney community for over 40 years. Both have worked in the kidney industry as leaders, patient advocates and drivers of change in the delivery of care and legislative education.
Brenda Tilley has served as the secretary of our FRAA board for several years and has been instrumental in encouraging others to get involved with our organization. She always cites Maureen Michael as her mentor and reason for her tireless volunteerism for FRAA. Brenda has been a nephrology nurse for most of her nursing profession and she has worked for Central Florida Kidney Center for the majority of her career. Like Maureen, Brenda has helped to develop and mentor countless Nurses, Social Workers, Dieticians, PCTs and even a few Doctors! She is well respected and loved by those whose lives she has touched, including my and every FRAA board member’s life, past and present.
Bob Winston has served the board in several roles most recently as President, Past President, and again in 2017 as Vice President. Bob has been a champion of serving the patients and the independent dialysis provider. He has supported the growth of FRAA and pushed to build and secure the future of FRAA/FRC through the development of a succession plan for our organization. As a patient advocate, Bob has found ways to increase the funding for NKFF’s Direct Patient Aid and in 2014 he created the annual FRAA Rich Salick Memorial Direct Patient Aid Fundraiser. This fundraiser is held at our meeting every July and all the funds collected are matched by FRAA. Thanks to the leadership of Bob Winston, this year we were able to add $12,000.00 to the NKFF Direct Patient Aid budget! At this year’s FRAA Night of Honor, Bob was the recipient of the first-ever awarded NKFF Richard Salick Humanitarian Award for his everlasting efforts to bring positive change to others.
Robert “Bobby the Lobby” Reynolds has served as FRC’s lead lobbyist for nearly twenty years. During this time Bobby has been in his words “on the job” to identify and pursue all legislative issues that affect our kidney community. Bobby has led many legislative victories for our Florida Kidney Community and along the way he has developed some long lasting programs that will continue to drive our mission and purpose. Bobby was instrumental in creating our Florida Kidney Day and has handled the logistics of our capitol legislative visits from the beginning. Several years ago, Bobby instituted our AHCA ESRD Advisory Task Force and helped to nurture FRAA/FRC’s relationship with AHCA for the benefit of Florida Kidney patients. And today Bobby continues to influence the growth and reach of FRAA/FRC through the idea, creation and development of this newsletter.
With the departure of Bobby the Lobby, FRAA/FRC has accepted Ron Watson of Watson Strategies to fulfill the role of our organization’s Lobbyist. Ron has been working along side our team for a few years and has met the responsibilities of his new position with curiosity & great enthusiasm. Ron has made visits to dialysis centers to learn first hand what it means to be a patient, a caregiver and a staff member in the kidney community. We look forward to working with Ron to provide education and insight on all things kidney for our Florida legislators and health care policy makers.
Welcome New Board Members
Moving in to my final year as President I feel very confident that we have strong new board members coming in to continue to drive change and leadership in our organization.
Remaining on the board for this year:
Candy Magiera, Administrator US Renal – Treasurer
Sue Rottura, COO Pure Life Renal – Board Member
Joe Moscato CEO Moscato Services – Board Member
Terri Beck, Regional SW Fresenius Kidney Care – Board Member
Bob Loeper VP Fresenius Kidney Care – Legislative Chair
Jennifer Haggkvist, Clinical Specialist US Renal – Clinical Specialist/Educator
Our new board members come from different backgrounds and bring new perspectives to our organization.
Jon Eustace, Sr Business Development Dialyze Direct Florida – Vice President
Roy Meek, Facicity Adinistrator, Central Florida Kidney Centers – Secretary
Mark Brown, CEO Priority Rx – Board Member
Savanna Pitard, CEO NKFF– Board Member
Please feel free to contact any one of the board members for support and resources.
A Final Note:
FRAA has combined with the Florida Renal Coalition (FRC) to continue to drive awareness, education and positive change for the kidney community of Florida. These two organizations have worked hand in hand over the years and the partnership path was an obvious one. As a joined organization, we remain neutral in our affiliation within the kidney care industry and encourage all members and partners to become involved as a board member or volunteer
FRAA is committed to the mission to continuously improve the overall delivery and access to care for kidney patients through collective educational efforts of its members and to provide education to the elected officials regarding issues that affect the Florida kidney patients and industry.
On February 7, 2017 the FDA approved injectable Parsabiv, an equivalent to oral Sensipar for use in Hemodialysis patients. This medication will be commercially available for purchase in January of 2018. Effective January 1, 2018 injectable, intravenous and oral calcimimetics (Sensipar) will qualify for the Transitional Drug Add-On Payment Adjustment (TDAPA). This means the Dialysis provider will be responsible to bill these medications to Medicare Part B as an add on payment to the bundle base rate. There will be a transition for existing patients on oral Sensipar that do not transition to Parsabiv from their Medicare Part D plans to a Medicare Part B benefit billed by the Dialysis Provider under the TDAPA. For 2018 and beyond oral Sensipar will remain available for Hemodialysis patients not identified as candidates for injectable Parsabiv as well as PD and other home modalities where an injectable is not an option.
It is important for Dialysis providers to identify all patients taking oral Sensipar and their respective payer mix to determine who will be impacted by this change. For patients remaining on oral Sensipar the Dialysis provider will need to take appropriate steps to transition patients to a Specialty Pharmacy that is capable to meet logistical and pricing terms acceptable by Dialysis provider.
For additional information regarding the TDAPA see https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/downloads/mm10065.pdf
As we all know, Labor Day weekend came to an abrupt end when hurricane preparations were set in place as Irma’s path loomed towards the entire state of Florida. Although some areas were hit harder than others, the renal community agrees that all kidney patients were affected in some way. In order to recover from the devastation from Irma, non-profits, dialysis centers, and the community have come together to do all they can for our patients in need.
National Kidney Foundation of Florida
Both the National Kidney Foundation headquarters and the Florida affiliate have setup donation funds to directly assist dialysis patients through the Florida Direct Patient Aid Program. Every month, Florida funds patients who need financial assistance for food, transportation to treatment, rent, and utilities. Following the hurricane Irma devastation in Florida, the NKFF is encouraging social workers to apply for Direct Aid indicating if the patient’s needs are related to the hurricane. The NKFF has allocated funds that will be used to support all requests for hurricane assistance through the Direct Aid Program. To make a donation to the Hurricane Irma Assistance Fund, visit kidneyfl.org.
ANNA Conference attendees had the opportunity to write notes of encouragement and support to dialysis patients affected by Hurricane Irma. These letters will be distributed through the NKFF’s Direct Patient Aid mailing.
AAKP Postpones National Patient Meeting – Helps Patients in Wake of Recent Hurricanes
AAKP certainly felt the effects from the landfall of Hurricane Irma on the state of Florida. The Association was gearing up for its 2017 National Patient Meeting when the hurricane track aimed right for its meeting location of St. Petersburg, FL. For the safety of its meeting attendees, AAKP’s leadership proactively chose to postpone the Sept. 8-10 meeting. “More than 85% of our attendees are patients and their family members, as a patient-focused organization, it was imperative that we take into account their well-being and ensure we never bring a high-risk patient population into an even higher-risk environment. The potential for cancelled flights, flooding, power outages, disruptions in local transportation and medical emergencies where almost 100% at the time AAKP made its decision. Since the recovery of the hurricane, many of our predictions ultimately proved true,” said Gary Green, AAKP Executive Director.
As AAKP worked diligently contacting speakers, attendees, exhibitors and sponsors – much of the staff were also assisting patient attendees in cancelling travel/lodging arrangements to avoid loss of funds and redirecting medical supplies previously shipped to the meeting hotel. AAKP and NxStage Medical partnered to redeploy the home hemodialysis supplies being shipped to the meeting to other parts of Florida where they would likely be needed during and after the storm. AAKP continued its commitment to helping Florida patients by posting in real-time emergency updates and contact information on its website and social media pages. As we all move forward from the storm, AAKP is in the process of rescheduling the National Patient Meeting for the winter/spring of 2018. The Association promises and even bigger and better meeting than originally planned. Please continue to visit www.aakp.org for updates on the National Patient Meeting. We hope to see you there!=
Translife has also participated in the post Irma patient assistance by collecting items and bringing donations to the Salvation Army and other charities collecting goods.
Cleaning the Patient Station (in effect July 02, 2017)
Cleaning the ESRD station between patients: The Centers for Disease Control and Prevention (CDC) has recommended that a dialysis station, in order to prevent cross contamination, be completely vacated by the previous patient before the ESRD staff may begin cleaning and disinfection of the station and set up for the next patient.
Precaution: CMS reiterates that patients should not be moved from the dialysis station until they are clinically stable.
Filling Saline Syringes at the Patient Treatment Station (in effect July 02, 2017)
Preparation of Medications: ESRD facilities must follow aseptic technique when preparing and administering intravenous medications; including the filling of syringes with sterile saline for use during the dialysis procedure.
Filling Saline Syringes at the Station: Pursuant to current recommendations from the Centers for Disease Control (CDC), ESRD facilities may not fill syringes with saline from the single dose saline bag or IV tubing connected to the patient at the dialysis station. To comply with recommended safe injection practices, the facility may acquire pre-filled syringes or may prepare saline syringes for an individual patient in a clean area away from the patient treatment area.
Emergency preparedness Appendix Z from the state operations Manual (in effect November 15, 2017)
The “Medicare and Medicaid Programs; Emergency Preparedness Requirements for Medicare and Medicaid Participating Providers and Suppliers” Final Rule (81 FR 63860, Sept. 16, 2016) (“Final Rule”) Establishes national emergency preparedness requirements for participating providers and certified suppliers to plan adequately for both natural and man-made disasters, and coordinate with Federal, state, tribal, regional and local emergency preparedness systems. The Final Rule also assists providers and suppliers to adequately prepare to meet the needs of patients, clients, residents, and participants during disasters and emergency situations, striving to provide consistent requirements across provider and supplier-types, with some variations.
The requirements are focused on three key essentials necessary for maintaining access to healthcare during disasters or emergencies: safeguarding human resources, maintaining business continuity, and protecting physical resources.
In the Florida Legislature, there are 40 Senators and 120 Representatives. Below are the members of the two major healthcare committees in each respective chamber and what city the legislator’s main office is located within.
Creating a relationship with every legislator is important; however, the below legislators regularly vote on topics directly impacting kidney dialysis issues! (Click on their names for additional information)
Senate Committee on Health Policy
Senator Lizbeth Benacquisto (R) Ft. Myers
Senator Lauren Book (D) Plantation
Senator Dorothy L. Hukill (R) Port Orange
Senator Travis Hutson (R) Palm Coast
Senator Bill Montford (D) Tallahassee
Senator Bobby Powell (D) West Palm Beach
(Senator Lizbeth Benacquisto is a newly added member.)
House Health & Human Services Committee
Cummings, W. Travis [R] Orange Park
Santiago, David [R] Deltona
Democratic Ranking Member
DuBose, Bobby B. [D] Ft. Lauderdale
Baez, Daisy J. [D] Coral Gables
Berman, Lori [D] Boynton Beach
Brodeur, Jason T. [R] Sanford
Burton, Colleen [R] Lakeland
Combee, Neil [R] Auburndale
Davis, Tracie [D] Jacksonville
Grant, James “J.W.” [R] Tampa
Grant, Michael [R] Port Charlotte
Hardemon, Roy [D] Miami
Harrell, Gayle B. [R] Stuart
Magar, MaryLynn “ML” [R] Hobe Sound
Massullo, MD, Ralph E. [R] Beverly Hills
Pigman, Cary [R] Sebring
Silvers, David [D] West Palm Beach
Stevenson, Cyndi [R] St. Augustine
White, Frank [R] Pensacola
Williams, Patricia H. [D] Ft. Lauderdale
Yarborough, Clay [R] Jacksonville
(Newly added members are Reps Colleen Burton, Neil Combee, Tracie Davis, James Grant, Cyndi Stevenson, and Carl Yarborough. Removed members included Reps Thad Altman, Alex Miller and Paul Renner.)
Please join us in Tallahassee for the 10th Annual Florida Kidney Day, recently scheduled for October 24th and 25th. Why so early this year, you ask??
The 2018 Legislative Session is scheduled to begin in January instead of March. Because of the early start, committee meetings for the 2018 session began in September 2017, with two additional weeks in October, two weeks in November and one week in December.
On Tuesday Oct. 24 from 3-4:30 pm, Kidney Day participants will attend the annual ESRD/AHCA (Agency for Healthcare Administration) Advisory Task Force Panel at AHCA headquarters. This is an opportunity to meet with Florida Medicaid staff to share patient and industry concerns. This year’s agenda (subject to change) presently includes:
- Encouraging Medicaid home dialysis as directed by budget language
- Transportation issues
- Insurance reform effect on Medicaid program
- Network adequacy issues
- Adding protein supplements to patient list for $25 monthly cash expenditures
Tuesday evening is a casual dinner to network, socialize and prepare for the next days events at the capitol. We review our specific legislative issues including a Q/A for all attendees to become more familiar with FRAA talking points.
On Wednesday Oct 25th, the FRAA will set up a display table on the entrance level of the capitol visible to all passing through the main security. Legislative meetings with both staff and members occur throughout the morning focused on educating decision makers. We enjoy an elegant lunch break at the private Governor’s Club before finishing the day with afternoon meetings.
If you are a regular (thank you) or have never attended, please join us to see democracy in action. We try to have fun and make this an enjoyable experience for both veterans and rookies. And remember on Kidney Day, regardless of your personal political beliefs, we are all members of the Kidney Party lobbying on behalf of our patients!
Some Florida Kidney Day tips:
- Contact your Senator and Representative about a week before attending. Let them know your will be visiting and try to set up a meeting in Tallahassee.
- Treat staff with the same respect as legislators, they are the gatekeepers.
- Be flexible with schedule changes and agree to meet with aides.
- Dress nice, but wear comfortable shoes and be prepared to do a lot of walking.
- Travel light with consideration of security and metal detectors.
- Bring lots of business cards.
For block Kidney Day room reservations, please contact the Four Points by Sheraton Tallahassee Downtown – 316 W. Tennessee Street, Tallahassee, Florida 32301 – (850) 422 4201.