I had occasion in the past few days to explore the infrastructure of the US bone marrow transplant system, which naturally lead to comparisons with living organ donors.
National Marrow Donor Program – est. in 1986
United Network of Organ Sharing (UNOS) – est. 1986
NMDP is listed as a contractor on the Department of Health and Human Services website. The analogous organization would be UNOS. UNOS is the contractor that manages OPTN, the Organ Procurement and Transplantation Network, just as NMDP manages the C.W. Bill Young Cell Transplantation Program.
Underlying Federal Legislation
C.W. Bill Young Cell Transplantation Program
Stem Cell Therapeutic and Research Act 2005
National Organ Transplantation Act (NOTA 1984)
Who Handles the Data?
The Center for International Blood and Marrow Transplant Research (CIBMTR) – established in July 2004, combining the National Marrow Donor Program (NMDP) and the International Bone Marrow Transplant Registry (IBMTR)
Scientific Registry of Transplant Recipient (SRTR)
Budgets (funding from HRSA, aka ‘the taxpayers’):
Taken from FY 2012 budget available here.
Cord Blood Stem Cell Bank – 12 million (2010,2011); 14 million (2012)
C.W. Bill Young – 23 mil (2010); 24 mil (2011); 27 million (2012)
Organ Transplantation – 26 million (2011-2012)
Let’s break that down a bit, shall we?
The program also receives income from financial contributions. Fees charged to donors for tissue typing – about $100 – these fees are waived when financial contributions are available to cover the costs. Fees charged for in-depth database searches – about $21,000, Fees charged to the transplanting hospital once a match is found and the stem cells have been transferred (no idea how much that is).
From OPTN’s Finance Committee report June, 2011:
OPTN expenditures of $36,372,099 are expected to be funded by $32,987,202 in OPTN registration fees and $3,384,897 in appropriated federal funds.
Federally appropriated funding accounts for 9.31% of expenditures, the remaining 90.69% of funding is covered by OPTN registration fees.
Be the Match Foundation – helps with costs not covered by insurance (income sensitive); pays donor registration fee; invests in research. 2010 Fiscal Report cites revenues of $13.3 million.
UNOS Foundation – This FY2010 report is a bit more confusing because it cites ALL of OPTN’s finances, not just those from the Foundation. UNOS has other revenue streams, all of which are lumped in here too.
Data Services – $1.5 million
Mtg Fees – $337,000
Contributions – $522,000
Member Services – $236,000
Other – $578,000
UNOS fee – $6 million <- This line item concerns me. It is NOT the recipient registration fee paid to OPTN per federal mandate. So, is this the fee UNOS decided to charge for each living donor just cuz they could? If so, that certainly explains why they're so eager to round up more living donors.
BMDP follows bone marrow donors ‘until there is no complication’. They do not rely on hospitals to submit information, but contact the bone marrow donor directly. They also provide a longer-term registry for those bone marrow donors who wish to be included. Again, this entails self-report and direct contact with the donor.
OPTN meanwhile only offers two years of follow-up for living donors, regardless of condition. They rely on transplant centers to submit info, and despite giving centers credit for the form when one item is checked, 40% of living donors are still ‘lost’ by one year. There is NO long-term follow-up or data.
Donor Financial Assistance:
Granted I didn’t search exhaustively, but I could find no hint of a foundation or program that assisted bone marrow donors with extraneous costs (travel, lost wages, child care, etc).
However in 2007, the US federal government saw fit to provide $8 million over four years for this issue, also income related. The question (and rightful criticism) is – why is he govt paying to fly poor people across the country so they can donate organs, especially when they probably don’t have insurance and won’t have access to decent aftercare?
So in short, if the Bone Marrow program can use their nonprofit to help out with extraneous costs, why can’t UNOS? If the Bone Marrow folks can offer an effective, comprehensive long-term registry, why can’t the same be done for living donors?
A shift of $8 million over a four year period should do the trick.
ETA 11/28/2011: I’ve been informed the $6 million fee is a $75 fee UNOS tacked on to the federally mandated listing fee required of every wait list registrant. Understand what I’m saying – the federal govt funds the wait list and its management with a listing fee. UNOS decided unilaterally that they needed/deserved more money so they tacked on an additional $75 for their own pockets. Because there’s a Medicare benefit for those with end-stage renal disease, the bulk of that money is coming from the tax payers.