The ABCs of HDU:
ADVOCACY, BUILDING FOR THE FUTURE, and COMMUNICATING OUR MESSAGE
As 2018 comes to a close, it seems only appropriate to summarize the accomplishments of HDU, and develop a strategic plan for 2019:
1. Spearheaded the “Stop the MAC” campaign when CMS tried to limit the number of dialysis sessions per week to three. Created a patient video on the benefits of more frequent home dialysis. Ran a comments campaign. Met with key people CMS, who said “We’ve been waiting for you”! As of January 2019, the MAC’s have backed off on their proposed LCD’s.
2. Attended advocacy days on Capitol Hill with ASN and NKF, promoting more funding for Kidney Research.
3. Met with Secretary Azar on the announcement of Kidney X, a public private partnership with HHS and ASN.
4. Participated in Kidney Health Initiative, including representation on the Patient and Family Partnership Council.
5. Board members singly and collectively represented HDU at ESRD networks, speaking at major conferences, KHI, ASN, CMS, ANNA, and NKF.
6. Board members had several articles published in professional journals.
BUILDING FOR THE FUTURE
7. Retained a consultant to develop a strategic plan for the future of HDU culminating in retaining a part time Executive Director beginning 2019.
8. Elected a new President, Nichole Jefferson, to help steer HDU into the future!
9. Exhibited at targeted conferences, ASN Kidney Week, AAKP, ADC, and NKF Spring Clinicals.
10. Applied for and received funding from several grants, expanded funding sources to include additional website sponsors, and targeted and marketed Sponsorships to key companies and organizations. Created an Associate Sponsor and Partner program
11. Attended the The Kidney Project (UCSF and Vanderbilt) Advisory Board meeting to provide the patient perspective on risk/benefit of the implantable kidney.
COMMUNICATING OUR MESSAGE
12. Created a targeted email media/marketing list, expanded Facebook group, established a Twitter feed, and continued to update the user friendly website, and used these tools to get the message out for our proposed the MAC issue.