Travis major fights sickle cell in Uganda

  • Published
  • By Merrie Schilter-Lowe
  • 60th Air Mobility Wing
TRAVIS AIR FORCE BASE, Calif. --  Can an Air Force nurse devoted to a cause be the instrument for change in an entire nation?  Just ask Maj. Lukiah "Lucky" Mulumba, 60th Inpatient Squadron at Travis Air Force Base, California. 

For the past three years, Mulumba has conducted a daylong conference in her Ugandan homeland to provide aid and awareness of children born with sickle cell disease and calling for a national policy to provide education and better treatment for Ugandans with SCD. At the June conference, she achieved that goal.       

The Ugandan prime minister and minister of health promised to implement plans to treat and cure SCD. Mulumba's 14-year-old daughter, Carol, was cured through cord blood transfusions and a bone marrow transplant eight years ago at Lackland AFB, Texas. 

"Prime Minister Dr. Ruhakana Rugunda promised in his speech to the people of Uganda to build infrastructure for treating and curing sickle cell anemia, such as facilities for bone marrow transplant," said Mulumba, who is an intensive care nurse at the David Grant USAF Medical Center at Travis.  

Additionally, the minister of health, the Honorable Dr. Elioda Tumwesigye, "promised to begin massive sickle cell blood screenings for all Ugandans and to include information about SCD in school curriculum," Mulumba said.

Sickle cell disease, also known as sickle cell anemia, is an inherited blood disorder in which red blood cells become crescent or sickle-shaped. The cells become rigid and sticky, resulting in reduced or blocked blood flow, ultimately damaging organs, muscles and bones, according to the U.S. Department of Health and Human Services.

SCD is characterized by a number of acute and chronic health problems, including severe infections such as meningitis and sepsis; attacks of acute and severe pain requiring the patient to be hospitalized and given massive doses of narcotics, which sometimes does little to ease the pain. SCD can lead to blindness, stroke and death.   

Mulumba cited a United Nations research study that estimates 20 to 25 million people worldwide have SCD. Between 12 to 15 million of these people live in Africa. The disease is most common amongst people of African or Latin descent and those who consider themselves black, such as people from the West Indies, South America and the Caribbean.

About one in 13 African American babies is born with sickle cell trait, according to the DHHS.  About one in every 365 black children is born with sickle cell disease. The DHHS estimates that more than 100,000 Americans have SCD. The average life span of sickle cell patients is 40 years in developed countries like the United States.

It wasn't until Carol was born in 2002 that Mulumba and her husband, Abudallah, learned they carry sickle cell trait. Unlike SCD, sickle cell trait is not usually associated with severe or chronic health problems. However, parents with sickle trait are more likely to give birth to a child with SCD.

There are several theories about why SCD occurred. The most prevalent is that it protected against malaria. The most common form of SCD is sickle cell anemia, but SCD can cause other blood mutations leading to organ damage and death.

Effective management of SCD includes genetic counselling, neonatal screening and early diagnosis. Currently, bone marrow transplant is the only cure. However, this is an expensive procedure and most Ugandans don't have access to medical care nor can they afford it.

"No health care is a big issue in Uganda and few places offer it," Mulumba said.  "Some (Ugandans) have to pay private companies for care."
 
Mulumba, who earned her doctorate in nursing last year, has been traveling back and forth to Uganda since 2005 to talk about Carol's recovery and the struggles of children with SCD. She and her husband also set up the Uganda American Sickle Cell Rescue Fund, a non-profit organization, to raise money and awareness to fight SCD worldwide.   

The Mulumbas came to the United States from Uganda in 1995. She earned a bachelor's degree in nursing and went to work at Johns Hopkins Hospital in Baltimore, Maryland. She was commissioned in the Air Force in 2005 and assigned to Lackland AFB. 

When Carol was three days old, doctors told Mulumba that her infant daughter would not live past her seventh birthday. As a nurse, Mulumba knew a bone-marrow transplant would help cure Carol. What she didn't realize was how much Carol's condition would deteriorate.   

Against advice of doctors, Mulumba gave birth to a second child, Mark, in 2003. His DNA was perfect and a perfect match for Carol. Mark's umbilical cord blood was saved by the Cord Blood Registry, a biotechnology company with headquarters in San Bruno, California. 

Five years later, Carol received Mark's bone marrow and cord blood. The Air Force paid for the transplant procedures. Mulumba's third child, Aliah, also was born without SCD.   

The Mulumbas traveled to Kampala, Uganda's capital city, in June to speak about pain management, evidence based practices used to treat SCD patients in the United States and not giving up on children with SCD. More than 8,000 people attended the conference, including medical professionals, senior government officials and families.   

"We had visitors from all over - the United States, London, Brussels and most of Africa," said Mulumba. "I never imagined this when I started."

Mulumba said she was angry when she set up the first SCD conference in 2013. "I was angry that Ugandans were being taught 'there's not much you can do for sickle cell disease and it's a death sentence.'  

"As a medical person and mother who once raised a child with SCD, I have the expertise to give hope to those struggling everyday with SCD," she said.    

One of the first symptoms that a child has SCD is severe swelling in the hands and feet from lack of blood flow in the limbs. About 90 percent of Ugandan children die before age 5, Mulumba said.  Children who survive remain vulnerable to exacerbations of the disease. They are also stigmatized. 

"Sickle cell disease is still considered taboo in Africa. Marrying someone from a family that has the disease is considered a crime. Parents hide their sick kids; they don't want to be related to them," Mulumba said. "Fathers will leave the home and the family."
With this realization, Mulumba decided to sponsor SCD conferences. For the June conference, she also purchased 3,500 blood screening kits with the money raised from 'Go Fund Me' and donations from people at Travis. 

Mulumba also invited Dr. Nancy Green to the conference. Green is the associate dean for clinical research operations at Columbia University Medical Center in New York City, New York.

Green heard of Mulumba while working with the African medical community to set up support and treatment for SCD patients.  Green, who is also a practicing paediatric hematologist oncologist, served seven years as the March of Dimes' medical director. 

"I've been involved with many family groups...I've got a lot of experience with the local and national health organizations in the United States. This was nothing like that," said Green of the conference. 
Green said she talked about some of the medical therapies being used in the United States to treat SCD, including the drug hydroxyurea, which reduces pain and the need for blood transfusions and helps to prevent sickle cells from forming. 

"Hydroxyurea extends adult lives in the U.S. and there have been some positive benefits for both adults and children. However the drug has not been fully tested for safety. There is a study in process in Kampala and we're keeping a close watch on it," Green said. 

Green said the conference was more than she had expected. "It was a celebration of family. It was about giving the people hope.

"I think the Air Force is very lucky to have Lukiah," Green said. "She is so dedicated to this (cause). Several days before the conference, she had us talking on live radio and TV about the conference and inviting everyone to it." 

Since returning from Uganda, Mulumba has been contacted by officials in Kenya to organize a similar conference. Although she will be leaving for an assignment in Florida in the fall, Mulumba said her goal is to organize SCD conferences all over Africa, even if she has to take leave to do it.