The following article also appears in the summer edition of Memphis Crossroads, the Chamber's quarterly economic development magazine. Memphis Crossroads is available free at selection locations throughout Memphis (including Schnuck's markets), via mail for Chamber members and at the Chamber's offices on the 2nd floor of the Falls Building, 22 N. Front Street.

Marelle Aguillard was the type of person who put aside pain to push on. She was a home nurse in Memphis, caring for those who could no longer fully care for themselves, even as she suffered from her own sickle cell disease.
One day about two years ago, as she cared for an Alzheimer’s patient named Virginia McGehee, Marelle’s own suffering was evident. Virginia’s husband, Jim, noticed how Marelle’s right arm was swollen to double its size. Yet Marelle kept on caring for Virginia. “She walked into the room and the room would brighten,” Jim said of Marelle. “Nothing was too much trouble for her.”

Until Marelle’s symptoms became noticeable, Jim McGehee knew little about sickle cell disease—that it causes clotting as it starves tissue of oxygen, that it requires quick treatment to neutralize suffering and that it butchers quality of life before cutting life short entirely.

Another day while caring for Virginia, Marelle’s symptoms flared into what sickle cell sufferers aptly call a “crisis,” and Jim found himself taking Marelle to the emergency room. Hours passed before Marelle received any help in the crowded Memphis hospital, greatly extending her agony. Jim stayed with her, witnessing it. Later, he wondered: Couldn’t there be a better way?

Jim was in a position to get an answer. As the head of his own prominent East Memphis-based realty and development firm, he was a past chairman of the Greater Memphis Chamber and president of the Memphis Rotary Club – and also an advisor to the board of Baptist Healthcare. He relayed his emergency-room experience with Marelle to hospital officials.

“We’ve got to do something,” he told them.

Soon afterward, as Marelle was being treated by her doctor, Patricia Adams-Graves, she relayed McGehee’s desire to somehow improve treatment for sickle cell sufferers. Medical officials say the disease, which occurs more commonly in those of African and Mediterranean descent, is highly prevalent in Memphis, and Adams-Graves treats many sickle cell patients. As Marelle spoke with her, one patient in particular came to the doctor’s mind: Mark H. Yancy.

At only 32, and despite a lifetime with the debilitating illness, Yancy had already risen to become the major gifts coordinator for the Memphis-based Methodist Healthcare Foundation. He might be in a position to help, she reasoned. She phoned him, telling of “an influential businessman who wants to do something for sickle cell.” Soon, Jim McGehee and Mark Yancy met.

What has come from that chance sequence of events is an unprecedented, multi-million-dollar effort to change how — and how fast — sickle cell patients can be treated in Memphis. McGehee and Yancy will continue a campaign that began in April to raise $5 million for a comprehensive, 24-hour treatment center for Memphis-area patients who must currently turn to busy emergency rooms during painful episodes of the disease. The effort includes philanthropists, political and business leaders — and even hospitals that technically compete with Methodist.

“We have a bunch of sickle cell patients who don’t have anywhere to go but an emergency room,” McGehee said from his office in East Memphis. “When we are successful, and I’m determined we are going to be, we will alleviate so much suffering in our community.”

The need is underscored by the fact that Aguillard passed away at 39 in a Memphis emergency room on Sept. 15, 2009, just nine months after Virginia McGehee.

‘Joined at the bad hip’

At first, Mark Yancy and Jim McGehee might appear to have little in common.

McGehee is a fourth-generation Memphian, born just after the stock market crash of 1929. Now 80, he has spent a lifetime in business circles and, other than his service on Baptist’s board, has not been immersed in health care issues. Until recently, he said, “I was like the average American citizen — didn’t know a thing about sickle cell.”

By contrast, Yancy has been dealing with the inherited, incurable disease all his life. Diagnosed as an 11-month-old infant with hemoglobin SS disease, the most severe form of sickle cell, he has never been one to let it stand between him and his goals. If he felt ill on a school day as a young boy, his parents prodded him to attend class anyway. Call us, they told him, if you feel too ill to stay. He rarely did.

At 21 while attending the University of Memphis, classic deterioration of oxygen-starved bone forced him to have both hips replaced. But Yancy pressed on.

“I had to be self-motivated to learn the material,” he said. “It’s a dose of reality. You learn no one is going to wait on you because you are sick, so it’s incumbent on you to keep up.” He made the Dean’s List often and, after nine semesters over a seven-year period, obtained his bachelor’s degree in finance.

Now a veteran of three hip replacements, Yancy is working toward his masters in economics. He attributes his faith in Christ for giving him a can-do attitude, and said he feels blessed to be working for Methodist — a faith-based organization that he feels is adhering to its mission by tackling sickle cell treatment.

After meeting, Mark and Jim recognized in each other a drive to accomplish better treatment for sufferers. They even found commonality in their shared hip problems, with Yancy’s barely-noticeable limp from his hip surgeries and McGehee having broken his own hip by once “falling off a mountain,” he said.

“We’re joined at the bad hip,” Mark said, grinning at Jim. “My father is first and foremost my mentor, but Jim has kind of become a mentor to me, as well. We both are uniquely driven to see people with this diseased helped. We’re driven to make a difference.”

Gayle Rose, founder and chairman of the Rose Foundation, is co-chairman of the fundraising campaign, but Jim and Mark have formed a bond that significantly adds to the effort for sickle cell patients.

As the two have met in planning meetings, spoken almost daily by phone or in person and met frequently with representatives of foundations, corporations, philanthropists and charitable organizations, Jim has learned from Mark, too.

Before, “I didn’t know enough to be dangerous,” McGehee said. “Mark started educating me about sickle cell. I’d give him 100 questions every time.”

Learning the contours of a disease

Mark helped Jim understand how sickle cell disease — named for the sickle-shaped red blood cells that make oxygen distribution difficult — can impede blood flow, which in turn causes tissue to be damaged. The results can include kidney failure, blindness, infections and joint destruction. Average life expectancy in sickle cell patients is 44 in women and 42 in men.

Memphis is in the middle of a high prevalence zone, said Dr. Raymond Osarogiagbon, a University of Tennessee Cancer Institute hematologist who treats sickle cell patients and is serving as an ambassador for the fundraising campaign. More than 70,000 in the U.S. have disease, according to the Sickle Cell Disease Association of America, and the Memphis area is home to an estimated 1,500 to 2,000 of them, Osarogiagbon said.

Children with the disease sometimes have better access to health care, experts say. But for adults — who may not be able to work because of the disease — “health care” is often reduced to an emergency room visit like the one Jim experienced with Marelle Aguillard.

As he explored the issue, Jim learned that medical professionals and others in Memphis were investigating best-care practices for sickle cell disease. But external support was needed. Officials at St. Jude Children’s Research Hospital, the Regional Medical Center at Memphis (“the Med”) and Methodist Le Bonheur Healthcare were all involved and concerned about the fragmented system in place to care for sufferers. For instance, the Med houses the Diggs-Kraus Sickle Cell Center, which provides outpatient care. But the center does not have specialized care for inpatients.

“He came away profoundly impressed by what a struggle this is,” Dr. Osarogiagbon said of Jim, “and (Mark) is deeply invested because he has the disease himself. He lives and knows it. Having the two of them in tandem like that, with their different entry points, they form a tremendous force.”

Replicating the ‘gold standard’ in Memphis

With its central location on Union Avenue, Methodist University Hospital, a teaching hospital, is relatively near the residences of many Memphians afflicted by the disease. After meeting with Jim and Mark, Methodist Le Bonheur Healthcare CEO Gary Shorb offered a floor of the hospital, as well as an outpatient center on the hospital’s campus, for a facility soon to be known as the Comprehensive Sickle Cell Center of Memphis. The facility will be patterned after the Georgia Comprehensive Sickle Cell Center in Atlanta, which Yancy said is the “gold standard” for such care. So-called “day hospitals” exist in New York and New Orleans, but “we believe this is a vanguard effort,” Yancy said.

Using the model, a registry will be created so that when a patient in crisis arrives, their medical history will be swiftly available. Intravenous fluids and pain medicines — and for some, blood transfusions and oxygen —will also be swiftly delivered.

Also, the center will fund a researcher dedicated to seeking ways to provide even better care to sickle cell sufferers to head off crises and perhaps to even find a cure. “Finding new ways to treat the disease is pretty important,” said Shorb of Methodist.

Before center doors can open, $5 million must be raised to hire knowledgeable doctors and to train a nursing staff specifically to treat sickle cell patients.

Yancy expects renovations to the first floor of the Medical Arts Complex building on the Methodist campus to commence soon after fundraising efforts conclude. The center should be open quickly after the redesign is ready, he said.

A broad community effort

Raising the money has united others besides Mark and Jim as they push toward their November goal. Several veteran Memphis donors, including Meg and Scott Crosby, who raised millions of dollars for the Salvation Army’s Kroc Center of Memphis, along with Memphis Grizzlies point guard Mike Conley, are part of the team.

The men and their families have made personal financial contributions, too. Jim donated $250,000 in honor of both Virginia and Marelle. Mark’s father, Luke, president and chief executive officer of the Mid-South Minority Business Council, donated $50,000.

“We’ve been getting gifts in the five-digit range every week,” McGehee said.

As of June, almost $600,000 had been raised by people stepping up, just as McGehee did after that first encounter with Marelle Aguillard’s suffering.

“Memphians are incredibly generous,” Yancy said. “We get all that bad talk, ‘Memphis is this and Memphis is that.’ But look at this.”