Hawthorne Fund Releases 2018 Annual Report

  • Andy
  • 01 Mar 2019
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In 2016, the National Kidney Foundation of Florida (“NKFF”) received a bequest 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 and second distribution year were very successful. After receiving the bequest, 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 of PAP, income, liquid assets, expenses, and an ongoing plan for funding of medication. In addition, a consent form is required.
During 2018, a total of $63,002 was distributed to 61 post-transplant patients who were unable to cover the cost of their immunosuppressant medications. The average distributed per month was $5,250 with a steady growth in requests and funding throughout the entirety of 2018. We also began to distribute grants on a monthly basis as of April 2018 in order to accommodate patients’ needs. We believe this growth is due to the increase in information that was disseminated throughout the transplant and renal communities in 2017 and 2018.
In late 2018, we noticed that some patients were approaching their lifetime limit of $3,000 and, after further investigation, discovered that these patients were retaining the grant checks (which are made payable to their pharmacy). Our staff has worked diligently to follow up with these patients and find out why checks were not submitted to pharmacies on a timely basis. NKFF has discovered that there has been miscommunication between the pharmacies, the patients, and NKFF about patient prescription dosages. The NKFF Board president, staff, and
2018 Annual Report on the Hawthorne Fund Page 2 of 3
patients formed a committee to develop a more streamlined approach to the process of distributing grants to patients.
NKFF has now partnered with Priority Health Rx and Healthmap Solutions to develop a strategy that will eliminate 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 create an online patient portal that connects NKFF, patients, and Priority Health Rx. Patients will need to apply through the portal annually to ensure that their information is correct and relevant. Our staff will continue to review each application and give the appropriate approval. Once a patient is approved for a Fund grant, Priority Health Rx will receive notification to fill the patient’s prescription and will also handle all appropriate billing. NKFF’s Board and staff are confident that this partnership will prove to be more efficient and conducive to the growth of the Fund. This will also open up new opportunities to raise awareness of the Fund and to increase the overall patient impact.
Our committee has also been working on a communication protocol to ensure that as patients approach their lifetime limit of $3,000 they can easily transition off of the Fund without financial hardship. Working with transplant centers and their medical professionals statewide, we have found that each center shares responsibility for keeping a transplanted kidney functioning. During NKFF’s 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.
Our Board, staff, and volunteers continue to work diligently to promote the Hawthorne Fund. In 2018 we were able to speak at meetings of the Florida Society of Nephrology and 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 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.
2018 Annual Report on the Hawthorne Fund Page 3 of 3
Patient 1
“I was having a terrible time with the copays for my transplant medications. I was calling my advocate Joe Karan about another situation with my drugs. This is when I found out about the Hawthorne Fund. I sent my application in and it was approved. This allowed me to save $150.00 per month. Knowing I had the extra funding helped me end the stress of never knowing if I had the funds for my meds every month.”
Advent Health
“I need to let you know what your program is doing for our patients. We have sent you multiple applications of patients who really needed transplant anti- rejection drugs and could not cover the full price or did not have the co-pay amount.
The Hawthorne Fund is the perfect program to assist these patients maintain the precious gift they received.
Since Astellas halted their Tacrolimus help, the Hawthorne fund was and is the perfect program to assist those affected by the shutdown of Astellas Patient Assistance Programs.
Many thanks to NKFF and the Hawthorne Fund for everything you do for the patients.”
Patient 2
“I feel compelled to let you know what this programs means to me.
I realize that a hundred dollars does not sound like a lot but to some of us it is the difference between getting our transplant prescriptions without fear.
Please allow me to extend my appreciation for what you do for patients.”

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