2019 Hawthorne Fund Annual Report

In 2016, the National Kidney Foundation of Florida (“NKFF”) received funds to establish the Hawthorne Fund, a fund to provide financial assistance grants to transplant patients to help with the cost of immunosuppressant medications. The Fund became operational in 2017 and, with the help of staff, the NKFF Board of Trustees, and volunteers, the Fund’s first, second, and third distribution years were very successful. After receiving the fund, NKFF formed a committee of volunteer social workers, NKFF staff, and board members to establish guidelines for the administration of the Fund. Fund applicants must be post-transplant patients who are uninsured or underinsured and grants may only be used to defray the patient’s out-of-pocket cost for immunosuppressant medications. The committee also established an annual budget of $84,000, under which grants of up to $1000 per patient could be made, subject to a lifetime maximum of $3,000 per patient. The committee then created and approved an application process. Applicants must complete an NKFF application form and provide proof of the denial PAP, income, liquid assets, expenses, and an ongoing plan for funding of medication. In addition, a consent form is required.

During 2019, a total of $154,733 was distributed to over 100 post-transplant patients who were unable to cover the cost of their immunosuppressant medications. The average distributed per month was $12,894 with a steady growth in requests and funding throughout the entirety of 2019.
In early 2019, NKFF partnered with Priority Health Rx and Healthmap Solutions to develop a strategy that will eliminate possible miscommunication between the patients, the pharmacies and NKFF, ensure that the proper dosages are identified, and ensure that appropriate prescriptions are filled and delivered to patients. Priority Health Rx is a mail order pharmacy with close ties to NKFF. Our Executive Board of Trustees has thoroughly examined the relationship and approves of this partnership. Healthmap Solutions, another established and trusted partner, created an online patient portal that connects NKFF, patients, and Priority Health Rx. Patients now apply through the portal to ensure that their information is correct and relevant. Our staff then reviews each application and gives the appropriate approval. Once a patient is approved for a Fund grant, Priority Health Rx receives notification to fill the patient’s prescription and also handles all appropriate billing. This partnership has proven to be more efficient and conducive to the growth of the Fund.

When patients approach their lifetime limit of $3,000 each from the Fund, our staff follow the communication protocol we established in early 2019 to ensure that the patient can easily transition off of the Fund without financial hardship. This includes a personal phone call to the patient from NKFF staff to notify the patient that they are approaching their limit. This is followed up with a letter mailed to the patient’s address as well as included in the prescription distribution. Another communication is then made from NKFF staff to the transplant center’s social worker where the patient was transplanted. Working with transplant centers and their medical professionals statewide, we have found that each center shares responsibility for keeping a transplanted kidney functioning. During our Medical Advisory Board (“MAB”) meeting, the MAB concluded that transplant centers will assume the responsibility of funding the patients’ needs for immunosuppressant drug coverage should the patient not have access to personal resources. The NKFF MAB is working with statewide transplant programs and coordinators to address this concern so that appropriate procedures are put into place when the patient does transition off of the Fund after reaching their lifetime limit. In addition, Priority Health Rx is working with the patients create a plan when possible to continue to provide assistance and service to these patients. Lastly, NKFF staff continue to work with each patient to provide information on additional resources that may be available for the patients.

As we review the past three years of distribution to patients from this life-saving Fund, we have decided to schedule a committee meeting to further investigate the efficiency of the program. This will also allow us to assess the needs of the patients and how our assistance is impacting each patient’s ability to lead a post-transplant life without the additional burden of not being able to cover the cost of the immunosuppressant medications. We will also review the annual budget to ensure that it is sufficient for the needs of the patients. This committee will consist of NKFF staff, Board members, and transplant social workers and coordinators. A structured report will then be drafted that will outline the future requirements and effectiveness of the fund for the patients. We are also following the progression of H.R. 5534 which extends the Medicare coverage of immunosuppressive drugs for transplant patients past the 36 months. This may have major impacts on patients if the bill were to pass.

Our Board, staff, and volunteers continue to work diligently to promote the Hawthorne Fund. In 2019 we were able to speak at meetings of the Florida Society of Nephrology, The Florida Renal Association, and at the Renal Professionals Forum about the utilization of the Fund. In addition, the pharmacies we are currently working with have also helped to spread the word. During monthly NKFF Direct Aid meetings held around the state, we continually advise dialysis social workers of the availability of the Fund to assist prospective transplant candidates who eventually receive transplants. Every transplant center in Florida has been educated about the Fund and the process for utilizing these benefits when their pharmacy customers need assistance. The Hawthorne Fund is presented at each health fair, kidney walk and speaking engagement in which NKFF participates throughout the year.