Live Donor Toolkits Publically available education for those wanting to learn more about Live Donation

Transcription

1 Live Donor Toolkits Publically available education for those wanting to learn more about Live Donation Rebecca Hays, MSW David Serur, MD Kathy Schwab, BSN,CCTC AFDT 2016 Conflicts of Interest Rebecca Hays: Chair, AST Live Donor Community of Practice Member, NKF Live Donor Council Honoraria from various transplant centers, academic conferences, and Connect to Transplant 1

2 What we ll do: Summarize project concept & work process (5 mins) Provide overview of Financial Toolkit (10-15 mins) Content Operationalize to clinical practice Provide overview of Medical Toolkit (15-20 mins) Structure Content Operationalize to clinical practice Consensus conference recommendations Implement an independent, national clearinghouse (e.g., website) to educate the general public and potential donors Use of technology should be improved or expanded to offer education outside of medical settings LaPointe Rudow et al. Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care. AJT, 2015 Apr;15(4):

3 Parallel work groups 26 live donation experts from 19 transplant centers volunteered time to build content Financial Toolkit work group Rebecca Hays, APSW (U WI) (project developer) Kristen Fischer, LCSW (Sanford Health System) Cheryl Jacobs, LICSW (UMN) (project chairs) Mara Hersh-Rifkin, LCSW (UCLA) Charlie Thomas, LCSW (Banner Good Samaritan) Lara Tushla, LCSW (Rush) Holly Warren, RN, CCTC (NLDAC) Medical Toolkit workgroups Medical Toolkit design work group Dianne LaPointe Rudow, DNP (Mt Sinai) (project developer) David Serur, MD (Cornell, NYP) Kathy Schwab, BSN, RN (Mayo) Marian Charlton, RN (Cornell, NYP) Mary Amanda Dew, PhD (UPMC) Elisa Gordon, PhD (Northwestern) Rebecca Hays, MSW (U Wisconsin) James Rodrigue, Ph.D (Harvard) Dorry Segev, MD, PhD, FACS (Johns Hopkins) Jane Tan, MD (Stanford) Roxanne Taylor, MSN, RN (Maine MC) Steve Woodle, MD (UCinn Health) Medical Toolkit writing group Dianne LaPointe Rudow, DNP (Mt Sinai) (project developer) David Serur, MD (Cornell, NYP) Kathy Schwab, BSN, RN (Mayo) Marian Charlton, RN (Cornell, NYP) Mary Amanda Dew, PhD (UPMC) Elisa Gordon, PhD (Northwestern) Choli Hartono MD (Cornell, NYP) Krista Lentine MD (St Louis U) Todd Pesavento MD (OSU) Sandra Taler, MD (Mayo) Roxanne Taylor, MSN, RN (Maine MC) 3

4 Building support, aiming for wide dissemination AST committed support Met with ASTS Live Donor Committee representatives, UNOS Live Donor Committee representatives, NKF, The Alliance all supportive Referenced other toolkits: First launch: AST website Target date: ATC

5 Ideas for LKD Financial Toolkit Concept: A resource for transplant programs to help reduce economic uncertainty and impact for LKDs. A one stop shop resource for all aspects of $$ impact. Potential components: 1. Summary of known financial risks 2. Equation model for helping LKDs estimate direct and indirect costs 3. NLDAC information 4. List of non-profit organizations & financial assistance 5. State tax laws for LKD 6. Detailed review of how Medicare Cost Report can be optimized by programs to reduce economic barriers to donation 5

6 Living Donor Financial Toolkit Introduction - Known Financial Risks of Living Donation Section 1 Living Organ Donation Cost-Estimation Worksheet Section 2 National Living Donor Assistance Center How to Apply Section 3 Nonprofit Sources of Financial Assistance for Living Donors Section 4 Living Organ Donation for Members of the Military Section 5 Fundraising for Living Donor Expenses Section 6 Insurability after Living Donation Section 7 Living Donation and Employment Section 8 State and Federal Laws related to Living Donation A summary for providers and potential donors alike 6

7 Living Organ Donation Cost-Estimation Worksheet Cost estimator tool Is interactive: Living Organ Donation Cost-Estimation Worksheet Individuals may have different financial concerns, or needs, when considering living organ donation. Each person is unique, given their situation, and needs to determine if, or how donation would impact their lifestyle and obligations. Some may have no financial worries, while most must examine ways in which they ll cover the direct and indirect costs related to donation. The attached worksheet was developed to assist potential living donors in determining whether they have adequate resources to meet financial obligations at the time of donation, while helping them understand areas with which they may require additional assistance. The form is not required to donate, but is intended to be useful as another resource to guide individuals as they consider donation and prepare for recovery. Monthly Take-Home Income (A) Current At Donation (based on C) Salary/Wages _ Salary/Wages (spouse) _ Social Security _ Pension/Retirement _ Unemployment _ Other Income Total Income _ Possible Expenses due to Donation (B) Possible Benefits for Donation (C) Paid Time Off/Vacation hrs/days Sick Leave hrs/days Paid Living Donor Leave hrs/days Spouse PTO, etc. hrs/days Short-term Disability % of income **When calculating benefits, consider: Likely time off work for donation - days/wks Ability to return to work part-time or lightduty? Y or N Possible Resources for Donation (D) Worksheet for donor candidates to complete with donor team guidance Lodging NLDAC Assistance Food Fundraising Telephone Other Resources Transportation/Travel Health Insurance Premium Total Resources Donation-related Medical costs Other Total Anticipated Expenses Estimate of Possible Donation-Related Expenses Total A + D (income/resources at donation) $ - (minus) Total B (donation-related expenses) $ = (equals) Out-of-Pocket Expenses $ Some chapters contain information that has never been presented in an organized way for those considering live donation: Living Organ Donation for Members of the US Military Members of the US Armed Forces and US Coast Guard are permitted to be living donors in most cases, but they must follow the specific polices and protocols of their specific Branch (i.e. Army, Navy, Marines and Air Force etc). In general: Members on active duty, who wish to donate an organ while living, need approval from their respective military branch commands. Requests for approval to be a living donor should be addressed to the member s commander after completion of compatibility studies. Upon receipt of the member s request to be a living donor, the commander will arrange for counseling by a medical officer concerning the nature of the donation and the surgical procedure involved. There will be an examination by medical officer or civilian physician to determine physical fitness for donation surgery. 7

8 The fundraising chapter uses a Q and A format to address common (tricky!) questions about fundraising and NOTA. Q: What if the recipient offers financial assistance? A: Accepting assistance to make donation cost neutral, meaning no financial gain is made by you for donating, is acceptable. Importantly, most recipients are not in any position to help, nor should it be expected (since expecting it would rule out a donor.) However, a recipient (or family) may want to assist the donor in donor-related expenses. Recipients or their family members may have fundraisers on their own behalf, or for donor expenses which are sometimes included in that effort. Completing the Kidney Donor Cost -Estimation Worksheet will allow donors to readily know any amount for which he or she requires assistance, and a donor would be able to inform the recipient of that amount, if asked. Examples of common donor costs where funds may be directed are: hotel, gasoline, food, household bills, etc. Be clear about the top amount that you d be able to accept and still be within the NOTA guidelines..as does the Employment chapter. Q: What is the Family Medical Leave Act (FMLA) and how is this different than any paid leave benefits? The Family Medical Leave Act (FMLA) ( allows eligible individuals who work for a company with 50 or more employees, and who work full-time for a minimum of a year (1250 hrs), to take 12 weeks of unpaid, job protected leave within a 12-month period for qualified situations. This protects an individual s job security, but does not pay for your time off. FMLA allows qualifying individuals to miss work for personal or family health reasons, i.e. as a caregiver for a donor, or a recipient. Your HR department can further explain the FMLA benefit and whether donation applies to eligibility. You may not receive FMLA benefits if You work part time You work for a small company You are new to your job You are a contract employee 8

9 The Toolkit is also a onestop-shop for information that may be available elsewhere NLDAC How to Apply The National Living Donor Assistance Center (NLDAC) is a government funded program that provides financial assistance to eligible living donors for their travel expenses to the transplant center. Approved donors receive a special American Express controlled value card to pay for transportation, food, and lodging up to a total of $6,000. NLDAC will also pay for up to two trips for the donor s support person(s). Will I qualify for the NLDAC? Eligibility is based on the recipient household yearly income, which should be no greater than 300% of the federal poverty guidelines (FPG). If the recipient household has an income greater than 300% of the FPG, a waiver for financial hardship may be requested, in which the recipient completes a worksheet showing how their medical expenses affect their overall budget- generally, if medical expenses mean that the family income falls within guidelines, the donor can get the grant. For complete 2016 information, see the NLDAC brochure. Other links include lists of: tax laws, nonprofits, and fundraising sites. 9

10 Medical Toolkit Table of Contents 1. Risk of ESRD for living donors 2. The risks of donor nephrectomy surgery 3. The donor with pre-diabetes 4. The donor with preexisting hypertension 5. The obese donor 6. Donors with stones 7. Donors with metabolic syndrome 8. Microscopic hematuria in kidney donors 9. The donor at risk for PKD 10. Pregnancy after kidney donation 11. The donor in Kidney Paired Exchange 12. The Nondirected donor 13. Psychosocial Risks of kidney donation 14. Living donor informed consent 15. Living Kidney Donors: information for the primary care provider Future goals More funding will allow: Redesign of materials for broader application, to include more interactivity, visuals, translation, and lowering reading/numeracy levels Video of donor/ recipient stories Neutral web site Partnership with other societies More toolkits, or toolkit chapters: Eg Live Liver Donor Toolkit 10