Woman's wait for kidney highlights low minority organ donor rates

[okarol]

Woman's wait for kidney highlights low minority organ donor rates

04:25 PM CDT on Saturday, August 1, 2009

By MEGAN GOODSON / The Dallas Morning News
mgoodson@dallasnews.com

Fourteen years after her lifesaving kidney transplant, Jennifer Cox of Cedar Hill hopes history will repeat itself. Not for her, but for her 23-year-old daughter, Tiffany.

Doctors say Tiffany needs a kidney transplant of her own, but she faces an obstacle shared by many blacks and Hispanics who need organs -- minority organ donor rates are low compared to the number of those in need.

Today is National Minority Donor Day, when national organ donation officials and those with Dallas' Southwest Transplant Alliance specifically ask minorities to donate organs at rates that reflect their numbers on the waiting list.

Because organs, most often kidneys, are matched with medical compatibility, minorities waiting kidney transplants have a better success rate if the organ donor is the same ethnicity.

"Our numbers are up for Hispanic donors in Texas," said Pam Silvestri, STA's public affairs director. "We started bringing in bilingual representatives to talk to families that have lost a loved one."

But she said similar success was not achieved when the same tactic was used with black families.

"I think there is a lot of mistrust with the medical community and African-Americans, going back to Tuskegee," said Silvestri, referring to the federal government's infamous medical experiment when hundreds of black men in Tuskegee, Ala., were intentionally left untreated for syphilis to study its effects.

Andrea Hawkins received a tissue transplant in 1993 after her left cornea burst from a lifetime of keratoconus, an eye condition in which the normally round dome-shaped cornea progressively thins, causing a conelike bulge to develop. She said she is very passionate about organ donation, especially within the black community.

"I think it's a lot of preconceived notions," Hawkins said of the lack of African-American donors. "People don't know the facts, and they don't know how the whole process works out for the good of others.

"When something happens to a loved one, people jump on the bandwagon, and that's good," said Hawkins, a marketing and media relations manager for the Dallas Parks and Recreation Department. "But learn about donor donation and get involved before you have to get involved."

In 2006, the Glenda Dawson Donate Life Texas Registry was founded, offering all Texans the opportunity to officially register to become organ and tissue donors.

"Becoming officially registered means that regardless of what my family says, my organs will be donated," Silvestri said.

Jennifer Cox hopes to change the attitude towards organ donation in the black community, for the sake of her daughter and others. She is a full-time administrative assistant at Oak Cliff Bible Fellowship church, but she also serves as a community advocate for STA, speaking primarily to blackchurches. She plans to attend a Minority Donor Day event today at the Greenville Avenue Church of Christ.

Cox received her kidney transplant in July 1995 after she went in for a routine checkup and doctors discovered that she had kidney disease, resulting in shrunken kidneys that were only 40 percent functioning.

After seven months on dialysis, Cox received her transplant at age 42.

"I never knew I could return to such good health," she said Jennifer. "It was a gift from God. I contacted STA, wanting to help in any way."

When talking to minorities about organ donation, Cox also encourages them to maintain good health.

"It's a long [waiting] list to get an organ, and you don't want your name to end up on it," she said.

But that's exactly what happened to her daughter.

Tiffany Cox was diagnosed with lupus at age 5 and high blood pressure at 10, and experienced renal failure at 19, which caused her to start dialysis a year later. It also landed her on the list of those awaiting a kidney transplant.

But she hit a roadblock in June when a cancerous mass was removed from one of her kidneys. She is now cancer-free, but her name was suspended from the transplant list for two years, although she continues on dialysis three times a week.

Despite the setback, Tiffany tries to live a normal life and has enrolled for fall classes at Mountain View College that are scheduled around her dialysis appointments. She eventually plans to transfer to the University of North Texas and major in biology to become a physical therapist.

And, like her mother, she will be a vocal advocate for organ donation.

"It's beneficial to the recipient and the donor," she said. "You are helping save a life."
ORGAN DONORS BY THE NUMBERS

Nationally

102,031 – total number of people awaiting organs

29,707 – number of blacks awaiting organs (29 percent)

17,458 – number of Hispanics awaiting organs (17 percent)

Texas

9,186 – number of people awaiting organs

1,894 – number of blacks awaiting organs (21 percent)

4,065 – number of Hispanics awaiting organs (44 percent)

Patients awaiting kidney transplants:

Nationally

79,901 – total number of people awaiting kidneys

27,633 – number of blacks awaiting kidney transplants (35 percent)

14,352 – number of Hispanics awaiting kidney transplants (18 percent)

Texas

6,957 – total number of people awaiting kidney transplants

1,670 – number of blacks awaiting kidney transplants (24 percent)

3,497 – number of Hispanics awaiting kidney transplants (50 percent)

Donor Numbers:

Nationally

In 2007 and 2008, 67 percent of deceased organ donors were white; 16 percent were black and 14 percent were Hispanic.

Texas

In 2007 and 2008, 52 percent of deceased organ donors were white; 16 percent were black and 30 percent were Hispanic.

Source: Southwest Transplant Alliance

For more information about organ donation, or to get listed on the state's official registry, visit www.organ.org

http://www.dallasnews.com/sharedcontent/dws/dn/yahoolatestnews/stories/080109dnmetdonor.9a9d1bd3.html

[Jie]

It is not just low donor rate. Blacks and some other minority also have high rates of ESRD.  Combination of these two factors makes the waiting times much longer than the white.

[petey]

It is not just low donor rate. Blacks and some other minority also have high rates of ESRD.  Combination of these two factors makes the waiting times much longer than the white.

Whew!  Then I'm glad my husband Marvin isn't a minority if this is true.   He waited for 5 1/2 years the first time on the UNOS list, and then he didn't even get a transplant from the "list" (he got a living donor).  Three years later, he was back on dialysis and back on the UNOS list -- been waiting this time around for 6 years.  So far, his wait has been 11 1/2 years total -- and he is white.

I noticed that the mother in this article (J. Cox) waited for seven months for her transplant back in 1995.  Funny, but that's the same year my husband's name first went on the UNOS list.

[petey]

When I re-read my most recent post (see above), it struck me that my words may be construed as bitter, sarcastic words.

I'd like to add that I'm always thankful when anyone promotes organ donation anywhere among any group of people.  One more donated organ is, after all, one more recipient.  I would also like to say that I am happy for Ms. Cox that she only had to wait seven months for her transplant.

It's just that seven months of waiting seems like a blink of the eye when compared to Marvin's wait.

I guess there are days when I'm bitter and when I think that Marvin's journey (or whatever you want to call it) with all of this does seem a bit unfair.  Today must be one of my days to wallow in pity for Marvin and for me.  Maybe tomorrow will be better.

[Jie]

For the waiting time comparison, you need to compare the same blood type and PRA levels.  For the black, 80% of them have blood type O, the primary reason that waiting time for blood type O is close to twice as long as blood type A nationwide. The dominant blood type for whites is A. In the same blood type O, whites have higher donor rates, and the white deceased donor kidneys match better with white than black. Under the current allocation approach, one year of waiting is one point, and one tissue type match is also one point. If one gets a perfect match, it is 6 points, equal to someone who have waited for 6 years. So, it is not difficult to see the difference for waiting time among races. The shortest waiting times are generally in the areas with high percentages of white populations and the longest waiting times are basically in the areas with large black populations or some minority groups. San Francisco is an example of long waiting times for blood type B. 

[willowtreewren]

This is very interesting, Jie. Where did you get your information?

Aleta

[Jie]

Hi Aleta,

I have done some research on waiting time. From UNOS web site, you can get all waiting time information. I was curious about the big waiting time differences by races and blood types, so I traced down to the reasons for these differences.  To my disappointment, more findings come up more disadvance to me for waiting time. I belong to two groups that have a long waiting time: Asian Americans and blood type B. I found out that I have only 5% of chance to match 2 tissue types from the deceased donors of blood type B during the last 10 years in the U.S. and almost zero chance for matching of three tissue types. For blood type B, my area waiting time is 3-5 years. Since I would not likely get many points for the tissue matching, my expected waiting time would be longer than the average.  Basically, based on the area, blood type, and how common of the tissue types (this affects the race; the same race gets better tissue matching), you get an idea roughly how long the waiting time is.  Much of this information is in UNOS web site, and we can request UNOS for information to see how common a patient's three tissue pairs are (it is free). 

[petey]

Marvin's O+.  When he first went on the list in 1995, we were told that the "average" wait time for an O+ kidney in our region (southeastern North Carolina) was 18 months.  At that time, Marvin had a very low PRA.

After his transplant (2000) and after he went back on the list, we were told that the wait time for an O+ in our region was now up to 5-6 years.  Add to that the fact that Marvin's PRA is now 98% because he now needs to have a donor kidney that matches his antibodies and mine (I was his first donor).

As more and more people are added to the list, I'm sure the wait time increases.  To us, "average wait time" doesn't mean much; we think it's a luck of the draw.   Just wish we had a little more luck on our side.

[Jie]

Hi Petey,

Sorry to hear that Marvin's PRA is 98%. When a patient waits for much longer than the average waiting time, it is usually due to two factors: high PRA or uncommon tissue types.  For some areas, the mean waiting time for blood type AB is still less than 1 year, and there are patients with waiting time of 5 years or longer on the list. If one cannot gain points through tissue matching, his or her waiting time is going to be much much longer than the mean waiting time.   

[paris]

I agree Petey, average wait time doesn't mean too much. Average is just a mathmatical equation.  It truly is luck of the draw.  We have all heard of people who got a kidney in a years time even with high PRA and blood type.  And there are many with no extra problems and wait years and years.  I think we both feel that when someone gets a kidney, it means we are one closer to our time.   I keep waiting for you to post that Marvin got the call.

Also, is it a fact 80% of African-Americans are blood type O?   I have never heard that before.   Everything I have read explains that type O wait is longest because we can only receive type O.  I am listed at two centers; one states a 5-7 year wait and the other an average 2 year wait.   Type O plus 100% PRA means I don't wait for the phone to ring.

[petey]

Paris -- We're with you on the not waiting for the phone to ring -- at least this second time around.  The first time (1995-2000), every phone ring made us jump.  "It might be a kidney!!"  But, since 2003 and now with O+ and 98% PRA, we figure a kidney call is a long shot for Marvin.  But, Paris, miracles happen every day -- perhaps one will come soon for Marvin and for you.  If a miracle doesn't come, we're prepared for Marvin to live (and really live) a long, long time.  How about you?

[Jie]

Paris, here is the UNOS rule: (1) A go to A and AB, some special A can go to B; (2) B go to B; (3) O go to O; and (4) AB go to AB. O go to O is not the reason for a long waiting time for O. The shortest waiting time for AB is due to A can also go to AB.  The second shortest waiting time, A, is due to the race (white). The long waiting times for O and B are mainly due to black (O) and Asian/Pacific American (B). Blood types are quite different from regions to regions around the world. Although the UNOS policy is race-independent, but different donation rates, ESRD rates, and tissue matching result in different waiting times for some races.

Waiting time is a random variable, but the expected time is close to the mean waiting time. If one has a short mean waiting time, then he or she has a better chance to get a kidney within a short time than those why have a mean long waiting time.  The complicated matters are the high PRA and uncommon tissue types.

I do hope you and Marvin can receive a kidney soon. Multiple lists, especially in areas with high proportions of white populations, will help.

[paris]

Thanks Jie.  I have been on listed at two centers for four years and keep up to date on all the Unos data.  I just was questioning the statement that 80% of African Americans are type O bloood.   I have done some research today and the stats I keep finding show African Americans to be around 45% type O, Caucasian very similar number.  We must be reading different types of statistics.  I have been researching UNOS and wait times for so long.  It is interesting that there is so much information that doesn't support each other.

[petey]

Thanks Jie.  I have been on listed at two centers for four years and keep up to date on all the Unos data.  I just was questioning the statement that 80% of African Americans are type O bloood.   I have done some research today and the stats I keep finding show African Americans to be around 45% type O, Caucasian very similar number.  We must be reading different types of statistics.  I have been researching UNOS and wait times for so long.  It is interesting that there is so much information that doesn't support each other.

I think there are lots of stats out there.  The stats we found years and years ago (1995) when we first started on Marvin's dialysis/transplantation journey were from the UNOS.  They showed that O type kidneys could go (and did go) to O, A, B, or AB recipients.  They showed that A type kidneys went to A or AB, and B type kidneys went to B or AB.  An AB type could only go to an AB recipient. 

Turn it around, and that means that an AB person in need (recipient) can be transplanted with AB, A, B, or O.  (Thus, they have the shortest wait time.)  Those with A blood in need (recipient) can be transplanted with A or O; those with B blood can be transplanted with B or O.  But those with the popular O type can ONLY receive an O donor kidney.  That's why they call O blood the "universal" donor.

These same stats I found (and I'll have to find the link to them again) also showed that about 50% of the population had type O and 40% had type A.

We have always been told that O's had the longest waits because O kidneys were also going to other blood types.

We looked into multiple listing at another transplant center, but they were pressuring Marvin to transfer his "wait time" to their center, and he really, really didn't like the way they operated (no pun intended).  They also were unwilling to accept any tests/labs/ etc. from his first transplant center (Duke Hospital), and they appeared to us to want him to "jump through a lot of hoops."  Marvin said it was all a long shot anyway, so he decided to stay with his original transplant center and stay single-listed.

[paris]

Thanks Petey, my stats agree with yours.  Any blood type can receive O.  They don't reserve O just for O receipients -- the organ goes to who is at the top of the list. Every article or literature I have been given, states the same facts.   I hope this thread doesn't confuse people who are just learning about the blood type differences.   So, anyone with an extra O kidney --- Marvin and I are waiting!!

[okarol]

O blood type and B blood types kidneys are required to only to the O and B recipients - the only exception is for 6 of 6 antigen match. I have posted this before but the myth still prevails. I will find the exact UNOS rule and post it.

[okarol]

ALLOCATION OF DECEASED KIDNEYS

3.5.2
ABO "O" Kidneys into ABO "O" Recipients and ABO “B” Kidneys into ABO “B”
Recipients.

Blood type O kidneys must be transplanted only into blood type O
candidates except in the case of zero antigen mismatched candidates (as defined in Policy
3.5.3.1) who have a blood type other than O. Additionally, blood type B kidneys must be
transplanted only into blood type B candidates except in the case of zero antigen
mismatched candidates (as defined in Policy 3.5.3.1) who have a blood type other than B.
Therefore, kidneys from a blood type O donor are to be allocated only to blood type O
candidates and kidneys from a blood type B donor are to be allocated only to blood type
B candidates, with the exception for zero antigen mismatched candidates noted above.
This policy, however, does not nullify the physician's responsibility to use appropriate
medical judgment in an extreme circumstance.

from: optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf

[petey]

This is not where I got my original info, but it does discuss (toward the end) type O kidneys going to all different blood types.

http://www.utmb.edu/renaltx/process.htm

[petey]

Then there's this site that states that type AB is the universal recipient and type O is the universal donor.

http://www.aakp.org/aakp-library/Transplant-Compatibility/index.cfm

[petey]

Here's another site with a chart

http://www.usckidneytransplant.org/patientguide/donor.html

[petey]

Johns Hopkins' chart of compatibility

http://www.hopkinsmedicine.org/transplant/Programs/InKTP/blood_type.html

[okarol]

This is not where I got my original info, but it does discuss (toward the end) type O kidneys going to all different blood types.

http://www.utmb.edu/renaltx/process.htm

This is a quote from that site: However, there are federal regulations that govern matching for cadaver kidneys that outline the combinations that can be used. These regulations do not apply to living donor transplants.

[petey]

I think I've confused myself.  I thought we were talking about the wait time on the list for a cadaveric donor.  I thought these statistics referred to cadaveric donor - to - recipients in respect to blood compatibility.

[Jie]

Hi Petey,

All tables about the blood type compatibility you posted are correct. However, UNOS rule does not follow this natural compatibility due to fairness issue. If O can go to all other blood types, it is not fair to O patients. Because the long waiting times, O and B are restricted by UNOS to go to their own type, respectively, unless it is a perfect match, as pointed out by Okarol.

As the percentages of O for blacks, I guess it is not a hard number. I see where the 49% comes from in Paris's post. I saw the 80% number from some website a year ago and cannot remember where it is now. Here is the link that shows ABO distribution by regions:

http://anthro.palomar.edu/vary/vary_3.htm

[Sunny]

Staford Kidney Transplant center confirms to me what Okarol is referring to regarding type O cadaver kidneys going to type O recipients  per federal regulations. I am type O and wanted to know why the wait was longer for my blood type. I specifically asked if it was because type O can go to all blood types. Stanford advised me, yes, type O can go to all blood types but cadaver transplant regulations require that type O only go to type O, (barring some circumstances as spelled out in Okarol's citation). The reason type O takes longer is because there are more people on kidney transplant lists with type O blood. The reason there are more people on the list with type O blood is because the population in general has more type O.