A huge front-page story in today’s Denver Post features Love Hope Strength Foundation’s effort to sign up people to the bone marrow registry. The group hands out flyers as people drive into the parking lot of rock concerts (and other events) and then takes cheek swabs (later used to create an HLA profile) as they walk into the venue.

RobRushing

Rob Rushing of the Love Hope Strength Foundation at Red Rocks Amphitheater. Photo by Hyoung Chang for The Denver Post

I’m fascinated by the group’s motto of “Saving lives one concert at a time.” Here is an organization that has found a way to attract the young people who make the best bone marrow donors. It makes itself highly visible at rock concerts.

By doing so, Love Hope Strength generates publicity for its cause. Recruiting people at the event itself is very useful. But by doing it in a public venue it makes joining the registry a socially acceptable activity. And it does more. It generates interest in donating money and in becoming a volunteer. Finally, it educates the public about the important role adult stem cells play in fighting cancer and other diseases. Overall, this is a wonderful model to engage young adults in a healthcare related activity.

by George Taniwaki

Patients with end-stage renal disease (ESRD) often wait many years for a transplant. There are currently over 85,000 people in the U.S. waiting for a kidney transplant and the number grows each year. The average wait time is over three years. The mortality rate for those with ESRD on dialysis is over 15% per year, meaning that almost half of the patients die and never get a transplant.

Eliminating the waiting list for kidney transplants is a complex problem. But I see four separate solutions. They are reduce the incidence rate of ESRD, increase the supply of deceased donor organs, increase the supply of live donor organs, and apply new technologies to enhance or replace human organs. These solutions are not mutually exclusive and should each be investigated and instituted by the appropriate organizations. In fact, I don’t believe any one of these solutions will eliminate the list on its own, and so possibly all of them will need to be pursued.

I will illustrate the various pieces of this problem with the four flow charts shown below and then discuss each of the four solution areas in future blog posts. The text in orange boxes represent actions that can be taken. The text in green boxes indicate the intended results of those actions.

Access to healthcare

For blog posts related to patient access to preventative care, patient education on treatment modalities, or dialysis treatment, see entries tagged with Access To Healthcare or Dialysis.

Note that in the right side of Figure 1, educating patients about the advantages of transplant therapy will increase the demand for transplants, which will make the waiting list longer if other steps are not taken to reduce the incidence of ESRD or increase the supply of organs.

KidneyFlowESRD

Figure 1. Actions that may reduce the incidence of ESRD (left) and increase demand for transplant therapy (right)

Deceased donor transplants

For blog posts related to deceased donor transplants, including patient evaluation and experience, see entries tagged with Deceased Donor.

KidneyFlowDeceasedTX

Figure 2. Actions that may increase supply of deceased donor kidneys

Live donor transplants

For blog posts related to live donor transplants, see entries tagged with Live Donor or Kidney Exchange. (For more on the live donor evaluation process, see entries tagged with Donor Story.)

KidneyFlowLiveTx

Figure 3. Actions that may increase supply of live donor kidneys

New technologies

For blog posts related to alternatives to current transplant therapy, see entries tagged with Artificial Organs, Stem Cells, and New Therapies.

KidneyFlowNewTech

Figure 4. New technologies that may someday replace standard transplant therapy

Disclosure note: I am a community member of the Organ Donation Legislative Workgroup in Washington state. I am also a volunteer for several organizations that provide healthcare services to patients with ESRD. However, the opinions in this blog post are my own and do not represent those of any group.

All images by George Taniwaki

[Update1: I modified Figure 3]

[Update2: I added links to tagged blog posts]

The National Marrow Donor Program (NMDP) maintains a registry of all the potential bone marrow donors in the U.S. Registering to become a potential bone marrow donor is easy. Just sign up online or at your local blood donation center. They will take a cheek swab to get a sample of your DNA to determine your human leukocyte antigen (HLA) profile and add you to the registry. It’s that easy. Later if you are found to match a patient, you will be asked to undergo a more thorough examination prior to being accepted.

Finding a match

Matching for a bone marrow transplant is more difficult than matching for a kidney transplant. Tissue matching for kidney transplants requires that the patient not have blood type or HLA antibodies for the donor kidney. Most patients have low levels of HLA antibodies, so the chances finding a match are high enough that friends can often donate to them.

Tissue matching for bone marrow is much tougher. It isn’t enough for the patient not carry antibodies for the donor’s bone marrow. The donor and the patient must be exact matches for blood type and HLA profile. The chance of matching with a family member are about 10%. But the chance of matching someone who is not related are less than one-in-100,000, or even lower for minority groups that have less common HLA combinations.

The difficulty of finding a match was not known at the time the registry was created. An excellent story about the discovery of the match difficulty was published in the New York Times Apr 1989.

Encouraging more minorities to participate

Students at many universities now run campaigns to recruit minorities to register to become potential donors. For instance at Dartmouth, Stillman, Univ. ArizonaUniv. San Francisco, and other campuses nationwide. Vivek Kumar, a software developer in the Bay Area, has led several of these drives and is featured in the video below.

VivekKumar

Video from ABC7

Matching software

In a Nov 2010 press release, IBM has announced that NMDP has adopted IBM’s business process management (BPM) software to help automate the matching process.

The NMDP operates a registry of 8 million potential donors. It also cooperates with international registries to access to a total of 14 million potential donors worldwide.

By adding BPM software, the NMDP can take advantage of advanced analytics, social networking and reporting to streamline the record matching process by creating a online dashboard that hospital staff can use to track patients, potential donors, and the results of potential matches by geographic location.

IBM and NMDP hope the new software will lead to faster matches, which hopefully will lead to faster bone marrow transplants and improved medical outcomes for patients.

Before allowing a blood transfusion or organ transplant, it is critical to ensure that the donor’s blood or organ is not coated with antigens for which the recipient has antibodies for. As described in earlier blog posts, there are two sets of antigens that are important to test for, blood group and human leukocyte antigens (HLAs). Currently, the test for blood type costs about $10 to $20. This is reasonably low for a one-time test. But is too expensive to do repeatedly. Thus, if you are a regular blood donor, like me, they always ask you for your donor card which contains your blood type, rather than test it each time.

The cost of HLA testing is even higher. There are many genes involved with names like A, B, Bw, Cw, DP, DQ, DR, DR51, etc. Each gene has several possible allotypes, each identified by a one to four digit number like 7, 8, 27, 2701, etc. For a list of all the variations, see Wikipedia and NKR. Currently, the test to identify the allotype of a single HLA gene costs between $100 to $200 per person and requires a skilled technician with access to a lab. Each transplant center has its own requirements for which HLAs need to be identified. There can be up to 10 HLA tests required, for a total cost of $1,000 to $2,000 per potential donor.

Even a $10 test is expensive for patients in lesser developed countries. A $1,000 test, which can represent a year’s cash income, is unaffordable for patients in most parts of the world.

Yesterday, Tech. Rev. reported that Gil Garnier and his colleagues at Monash Univ. in Australia have developed a low-cost, paper-based blood type test (Analytical Chem. May 2010, subscription required). The antibodies are applied to the paper substrate using a modified ink jet printer. Running the test only requires a single drop of blood. If the blood agglutinates and does not spread, then the antigen in the blood reacted with the antibodies on the paper. If the blood spreads, then it means no reaction occurred. The example below shows the results for a person with blood type A RhD+.

BloodTypeTest Photo by Gil Garnier

Besides using only a small amount of blood, another benefit of this new test is that it can be conducted in the field without any additional reagents or refrigeration. And finally, in volume, the test is expected to cost less than 10 cents each.

If this technology can be extended to include antibodies for the HLAs, then it would be an excellent way to improve matching of living organ donors to recipients. Currently, transplant hospitals only allow a single donor to be evaluated at a time because of the high costs. With cheaper tests, everyone who is willing to donate could get tested and the person who is the best match would be selected as the final candidate.

Lower cost HLA tests could also dramatically increase the number of people who get on the national bone marrow registry. Currently, the registry needs to balance the cost of finding people willing to sign up to be donors with the cost of conducting HLA tests on the large proportion of participants who will never match a recipient. Lower cost HLA tests could reduce the need for this trade-off.

I just completed an apheresis plasma donation at the Puget Sound Blood Center. I give blood* about two to four times a year, and have been doing so regularly since I’ve been in college. I guess that makes me a member of the ten gallon club, though I don’t think I’ll ever be able to beat this guy’s record.

This is probably my last plasma donation for the next year or so, since I won’t be allowed to donate after my donor nephrectomy. I’ll miss the cookies and juice they always hand out** at the blood center. I hope the transplant center gives me lots of both. I believe they will quicken my recovery time and reduce the chances of psychological complications (see Feb 2010 blog post).

*I recently switched from donating blood to donating plasma, see Sep 2008 blog post for an explanation why.

**Does anyone know how this practice started? Every blood center and bloodmobile I’ve ever been to does this.