But what is needed is not just a knee-jerk reaction to one particular patient and his or her specific story. We need a colossal South Asian revolution in the United States, certainly in India, and throughout the Indian diaspora in order to tackle the urgent problem of bone marrow under-representation in our community.
The time is now.
Around the United States, Indians from California to New York to Texas have rallied together to help a young doctor named Vinay Chakravarthy find a bone marrow donor. Chakravarthy, 29, had just begun his residency in Orthopedics at Boston Medical Center last fall when he was diagnosed with Acute Myeloid Leukemia (AML).
Thanks to the effort of Vinay’s family and an extended community of well-wishers, the number of people who have registered in the registry has shot up by 10,000 people in the last month alone. But after two rounds of chemotherapy, Vinay still waits, desperately looking for that miracle donor to prolong his life. Vinay is now joined by another young man, 31-year-old Sameer Bhatia, who was also recently diagnosed with AML. Both young men got married in the last two years and dreamed of forging their path in the world in the upcoming decades.
A Swab of the Cheek Puts You on a Life-Saving Path
Currently, the South Asian component of the National Bone Marrow registry is incredibly small and South Asians are dying for lack of a bone marrow match (currently placed at a 1 in 20,000 chance of a match). When Caucasians need a bone marrow transplant, their chance of finding a match is 80 percent, according to the Asian American Donor Program (AADP).
South Asians, even when pressed to register, simply do not sign up. This is in part due to ignorance, somewhat to indifference, and reflects an innate fear of the actual donation process should they be determined a match. Most don’t realize that registration and the marrow donation process itself have become much simpler over the years.
Adding oneself to the registry is a two-step process, detailed at http://www.aadp.org. According to AADP, potential registrants can attend a drive, request a home kit or visit a local branch of the NMDP near their residence. Registrants first fill out a form giving their contact information and listing any medical conditions; this is followed by the use of a special sponge-tipped or soft brush swab used to collect tissue from inside the cheek. In ten minutes, a registrant is on the path to save a life—one day from now or twenty years from now.
Meenu Bedi, 33, a pharmacologist in San Ramon, got a call from the NMDP to save a life in January 2007. The call was to inform her that her tissue had matched that of a 54-year-old East Indian woman in desperate need of a bone marrow transplant.
“I didn’t even let her finish. I didn’t even think twice about donating,” Bedi says. So in the month of February, Bedi underwent a series of blood tests, a physical, and an EKG. Early in March, she was prepped at Stanford for a procedure called ‘Apheresis’ which is used seventy percent of the time for bone marrow donation. Bedi has since found out that her recipient is alive and well and responding to the transplant performed in March.
A Look at the Bone Marrow Donation Process
There are currently two ways in which the donation may happen. In both types of procedures, doctors are looking to harvest blood forming stem cells. These stem cells are already differentiated to produce blood cells in the body. The stem cells are primarily produced in the bone marrow. Traditionally, this is the site from which the stem cells have been extracted, but about eight years ago, scientists discovered that stem cells also exist in very small amounts in the blood stream. Both methods have become ways to extract the same thing: blood stem cells.
It is usually the recipient’s doctor who decides which of the two procedures is ideal. Doctors have found differences in a recipient’s outcome depending on where the stem cells come from. Some studies have shown that stem cells from PBSC (Peripheral Blood Stem Cell) have a higher incidence of Chronic Graft Versus Host disease for transplant recipients. A patient’s age, health status and disease status are carefully considered when choosing which procedure a donor will be asked to undergo. Finally, a donor’s health is also considered, and the coordinator dealing with the donor usually reports to the NMDP about any special health considerations.
PBSC donation (happens in about 70 percent of procedures) takes place at an apheresis center. Apheresis is the process to separate the different components in blood to obtain the type of cell needed. There are few blood stem cells in the blood stream; in order to increase the number of blood-forming cells, donors receive daily injections of a drug called Filgrastim for five days before the collection. The donor’s blood is then removed through a sterile needle in one arm, passed through a machine that separates out the cells used in transplantation, and the remaining blood is returned through the other arm.
The actual procedure takes about five hours in one day (a donor is given DVDs to watch during this time), or the donor may choose to donate in two collections over two days.
Risks in a PBSC Donation Procedure
There is minor risk of infection as with any puncture of the skin. Filgrastim has been known to cause side effects such as possible headaches, muscle aches, and bone aches while the donor is taking the medication. This may set in about two days into the five-day process.
During the actual procedure, some other discomforts may include the donor feeling chills from the citrate, an anti-coagulant that enables blood to flow smoothly throughout the procedure. After a donation, donors may feel fatigued and have residual side effects from the filgrastim. The day after donation, however, 99 percent of this medication is gone from the body and donors no longer feel the side effects.
Bone Marrow Donation (happens in about 30 percent of procedures) is a surgical procedure performed in a hospital. It is referred to as ‘surgical’ because of the use of anesthesia. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor’s pelvic bones. It is either general or local anesthesia, and the donor usually discusses this with the doctor coordinating the donation. A bandage is placed over the collection site, and no stitches are required. A donor may be asked to stay overnight to be monitored when he or she wakes up. The intention, however, is that donors go home the same day.
Many donors receive a transfusion of their own previously donated blood after they give marrow. A donor’s marrow is completely replaced within four to six weeks. The actual collection procedure takes about an hour.
Risks in a Marrow Donation Procedure
The risks here mostly come from the use of anesthesia. There are typically side effects to anesthesia after waking up. Some people may experience a sore throat, hypotension, nausea or other possible short-term side effects. Another risk may involve infection in the harvest site (as with any puncture of the skin).
Typical discomforts include possible hip/leg/back pain in the area for several days. This decreases each day as the donor recovers. It takes four to six weeks for marrow to completely regenerate itself, but the soreness lessens around five days after the donation. Pain medication is offered to help relieve the donor from the soreness. Other discomforts may include fatigue or bleeding as with any general hospital or surgery.
Kalpana Mohan is a freelance writer in Saratoga, Calif.