June 9, 2014 at 1:00 am

Transplant wait lists grow

Despite record need, Metro Detroit lags in organ donations

Beaumont dialysis technician Michale Rayner begins Peter Mays' kidney dialysis session, set to last 3 hours and 45 minutes. Mays' kidney failed 27 years ago, and he has had three transplants, which failed. (Tanya Moutzalias / Special to the Detroit News)

While the need for organ transplants in Michigan is at an all-time high, the number of people in populous Metro Detroit willing to donate lags the state and nation.

That’s particularly troubling for minorities, most of whom live in the Metro region. The need is particularly acute among African-Americans.

“More than 4 million people live in Metro Detroit; that is where most of the people are that need transplants,” said Tim Makinen, Gift of Life Michigan spokesman.

According to figures released last week by Gift of Life Michigan, a record 3,330 Michiganians are on the state’s transplant wait list, up from 2,977 in 2011.

Nationally, there are 122,866 people — nearly an all-time high — waiting for organs such as lungs, livers and kidneys.

This year, 34 percent of adults in Wayne County signed up with the state’s registry. Oakland had a 48 percent participation rate; Macomb’s was 42 percent. In Detroit, just 25 percent of adults are registered donors, according to Gift of Life Michigan.

Statewide, 47 percent of adults are registered to donate, nearly identical to the national rate of 48 percent.

“The number of organ transplants has gone up slightly but can’t keep pace with the number of people who are added to the transplant waiting list,” Makinen said.

That comes despite efforts by the Michigan Secretary of State’s Office to make it easy for residents who renew their driver’s license to agree to join the state’s Organ Donor Registry. Also helping to push donations is Gift of Life Michigan, which is reaching out to minority communities to boost interest in donations.

Of those on the wait list in Michigan, 1,207 or 36 percent, are African-Americans — more than any other racial and ethnic minority. Blacks make up about 14 percent of the state’s population, according to census data.

Whites make up 56 percent, or 1,855, on the wait list, while Hispanic patients are 3 percent, or 105, of the total.

“What is driving the increase are illnesses such as hypertension and diabetes, which are chronic problems across the country,” Makinen said.

Peter Mays, 46, of Detroit, a three-time kidney recipient, said many people mistakenly believe they can’t donate a kidney without damaging their own health.

“I think a lot of people are uninformed. You can survive with one kidney,” Mays said. “Even with just 30 percent kidney function, you can still have a normal life.”

Mays, who is black, must undergo dialysis three times a week because his body rejected all of the transplanted kidneys.

“In my wing, I look at the other people there; some are diabetic, some are amputees, some have COPD (Chronic Obstructive Pulmonary Disease),” Mays said. “It’s really a harsh life.”

Makinen credits joint efforts by Gift of Life and the Secretary of State for a steady rise in donors.

Staff at the branches ask people if they would like to add their names to the donor registry. Gift of Life Michigan received federal grants in 2008 and 2009 that funded an advertising campaign targeted at residents in Oakland and Wayne counties encouraging people to register. .

“The Gift of Life probably hasn’t done quite as much in Macomb County as we could have to this point,” Makinen said about Macomb’s percentage. “They may still be catching up.”

Boosting participation

Donation advocates say two factors are to blame for the low number of African-Americans on the donor list.

They’re more suspectible to diseases that can require a transplant and they’re less likely to donate organs, leading to longer waits for life-saving surgery.

“Diabetes and high blood pressure rates are escalating, especially in the African-American community,” said Remonia Chapman, program director for Gift of Life Michigan’s Minority Organ Tissue Transplant Education Program. “This is a critical issue in our community and that’s why the waiting list is so disproportionate.”

To boost black participation rates, donation advocates say they’re trying to educate African-Americans about the need for organs and the safeguards in the procurement process to overcome lingering distrust of the medical system. Fueling that skepticism, some say, are medical experiments decades ago that used black patients as subjects without their full knowledge or consent.

Black churches in Metro Detroit are taking the lead.

Deacon Lawrence J. Bailey of Detroit’s Holy Faith Tabernacle, a kidney recipient, is a volunteer with the transplant education program’s new initiative, Angel of Life, aimed at getting more minority donors. He and other religious leaders are visiting black churches, urging members to sign up and help those in need.

“You can’t talk to African-Americans without talking about religion,” said Bailey, 59. “That is the backbone of our being, so you can connect there. I am free to say the Lord healed me with the doctors’ help.”

Since the outreach program’s creation, the donation rate in the African-American community has increased from 10 percent to 20 percent, Chapman said.

Reluctance to donate

Kidneys are the most commonly sought organ, with 2,653 people on the state’s list, according to Gift of Life Michigan. African-Americans account for 1,099 of those, or about 45 percent.

In addition, kidneys are a particular challenge because while other organs are matched based on antibodies and blood type, kidneys are matched through antigens, Chapman said. Antigens generate antibodies, which can trigger organ rejection.

This means the most likely match for a donor is a person’s parents or family or someone from the same ethnic group. That makes it crucial to persuade more African-Americans to join the donor registry, advocates say.

The prospect of donating tissue or an organ can be a hard sell, especially for African-Americans, who often feel left out of the conversation, said Dr. Jason Denny, chairman of the Detroit Minority Organ Tissue Transplant Education Program. He said outreach to church members under the Angel of Life program is helping break down some of the mistrust.

“If you want someone to be a part of the party, you need to invite them in a way where they feel like they are a part of what is going on,” said Denny, a transplant surgeon and director of living kidney donation at the Henry Ford Health System’s Transplant Institute.

When Bailey addresses black audiences about organ and tissue donation, he often discusses how African-Americans have contributed to transplantation and medicine overall. Pioneers include Dr. Samuel Kountz, an African-American who performed the first successful kidney transplants between people who weren’t identical twins in 1961 at Stanford University, and who invented a machine to keep kidneys alive outside the body for up to 50 hours, Bailey said.

The Rev. Ronald Copeland, another participant in the church outreach program, said he’s here today because he got a transplant two years ago after hepatitis C destroyed his liver.

Copeland, 57, who is on the pastoral staff at New Prospect Missionary Baptist Church in Detroit, said he was a registered donor before getting his new liver, which he stresses to audiences.

“My organs will be a legacy,” he said. “Up to eight individuals can survive off of my organs. That’s powerful.”

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Peter Mays shows his pills: High blood pressure meds, vitamin C, ... (Tanya Moutzalias / Special to The Detroit News)