“Michelle’s House” Will Tackle Sickle Cell

A first-of-its-kind community center for those who battle sickle cell anemia will be named for former First Lady Michelle Obama and, according to plans, open for business by the new year.

The Southern Connecticut Sickle Cell Disease Association of America is working as feverishly as anyone can rehabbing a 100-plus-year-old, three-story building to open the center across from the Yale-New Haven Hospital St. Raphael campus at Chapel and Orchard with lots of in-kind and pro-bono help.

The association is leasing the building from Yale-New Haven for $1. Once it is up and running, the community center will be formally called ​“Michelle’s House” in honor of the former first lady.

Jim Rawlings, chairman of the association’s board of directors and a retired Yale-New Haven executive, said the hope is that adding Obama’s name to the center will raise the profile of a disease that has stood in the shadows for far too long.

The center’s aim will be to educate the community at large, including the health and medical community, about sickle cell and break the stigma surrounding a disease that impacts people with ancestors from sub-Saharan Africa, South America, the Caribbean, and Central America; Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy, according to the Centers for Disease Control.

African-Americans are the most impacted group in the United States, with 1 out of 10 people carrying the sickle cell trait that causes a disease characterized by pain, stroke, and premature death. The center will be specifically concerned with the 40 percent of young people with sickle cell who repeat a grade. (That’s compared to an overall average of only 4.5 percent of young people who repeat a grade.) The center is partnering with Southern Connecticut State University to provide student services to help students with sickle cell keep up with their studies.

Rawlings said he hopes that Obama might get wind of the project and lend her star power to the cause of raising money to keep the center sustainable. Acquiring the building at the corner of Orchard and Chapel was also a part of the strategy of visibility, according to Rawlings.

The association has been bunking with the Greater New Haven NAACP, where Rawlings had been the executive director for eight years, and the Firebird Society of Greater New Haven on Whalley Avenue. Rawlings said when he was looking for a home for the sickle cell community, he was offered a lot of other properties near the hospital. Many were more shovel and move-in ready than the Chapel Street West building.

“The important thing about this location was the visibility,” he said. ​“When you travel across the United States … tell me where you see a facility for sickle cell?

“What you’ll see is the American Heart Association, the cancer society,” Rawlings noted, ​“nothing about the visibility of sickle cell. That’s why it’s so important that we chose this location.”

The journey to opening the center has taken more than two years and more than $200,000. That’s because the building was inhabitable when the association got the keys, and because the rehab is being done through a partnership with the state’s technical school system.

“When I opened up this door there was nothing here,” Rawlings said of the entryway. ​“They stole everything. They took the piping, the electrical. There were just studs here”.

“I guess they didn’t want the studs,” he said of the thieves that stripped the place bare. ​“There was no heating, no nothing. I opened the door and I said, ​‘What did I get myself into?’”

A Shame

Rawlings said once it is up and running, the center will have ​“22nd-century” technology that allows the association and its clients — those who carry the sickle cell trait and those who have been struck by the genetic disease — to reach out to health care professionals treating it and conducting research.

In addition to working to educate the community about sickle cell and the trait that causes it, the center will be a resource both for children who have fallen behind because of the disease and for their parents. They’ll have access to tutors and social workers. Rawlings also plans to meet with school superintendents of the major urban centers in the state to talk about how to help families and children impacted by the disease.

“There is no program in New Haven’s public school system, and no public school system, at least in Connecticut that I know of, that has a program that works with these young people in some way,” he said. ​“These children are as smart as any other children. But they’re running a gauntlet carrying an anvil. They can’t compete.”

While the University of Connecticut in Hartford and Yale-New Haven Hospital have strong sickle cell programs, there are no such programs outside of those urban centers. Rawlings said he hopes the center can pursue a grant to train community internists much like what was done during the AIDS epidemic.

He said that often times when a person with sickle cell anemia has a crisis and appears at an emergency room with pain, doctors are not trained to consider that particular disease as the culprit.

“All too often they’re stereotyped” as drug users, he said. ​“The only thing available to most patients is palliative care, which is pain management receiving medications that are pretty powerful. And so when a physician will see the medications and say ​‘Well they don’t need that. No one should be needing those types of things.’”

He said that further delays care for someone who is likely experiencing a great deal of pain.

“Excruciating pain,” he said. ​“They liken it to glass going through your veins.”

More internal medicine doctors with knowledge about sickle cell anemia would provide more access and choice. And access for treatment of a disease that mostly impacts a group that already has limited access to health care is a huge problem, he said.

Rawlings said it’s pretty shameful that so little is known about a disease that is over 100 years old. A disease that often kills those who have it by 45.

He said that the children of the Dwight neighborhood, regardless of their sickle cell status, also will have access to the student services the center will offer. The association has been fundraising heavily to support that. Rawlings last week made a pitch Tuesday to the Dwight Community Management Team Meeting to ask for a letter of support; board member James Rawlins Jr. made a similar pitch on the same night to the Quinnipiac East and East Shore teams.

The association is seeking $35,000 in federal block grant money to redo the parking lot for the center and turn half of it into a healing garden for clients to have a place for reflection and to get away from the mental and physical labor of dealing with the disease. But to provide the services and maintain the building for years to come, fundraising will be key. The association is in the midst of an ongoing fundraising campaign. (Click here to contribute.)

“The bricks and mortar is one thing, the journey is the awareness, the education piece, the lack of funding, the lack of attention, the stigma and the anti-social issues,” Rawlings said. ​“I served 35 years for the hospital for various construction projects and this the most complicated I’ve ever been on not because of the medical side which is by itself a challenge. But it is the cultural issues that are barriers to progress.”

The association is reaching people through a partnership with the health department’s marriage and license division. It also reaches people through events like the annual Freddy Fixer Parade in May.

Connecticut is a popular destination for immigrants who hail from different parts of the African diaspora who likely don’t know if they carry the trait. So, Rawlings said, the association must increase its outreach efforts. The center will create a place outside of the clinical setting that is informed by the people impacted by the disease, he said.

“It’s shameful that this is the first such facility in the northeast,” he added. ​“It speaks to the challenges around sickle cell disease — a disease that dominates minorities, a disease that dominates the poor.”

“And the lack of [attention] from the community broadly and that includes the medical community, inclusive of the health community, and inclusive of our own community,” he said. 

Click below to hear an interview with Rawlings on WNHH radio program ​“The Show” with host Michelle Turner.

Click below to listen to WNYC’s The Brian Lehrer Show about health disparities and sickle cell anemia, and their role in the death of Prodigy, a member of the renowned rap group Mobb Deep.