Delete Blood Cancer DKMS
|Headquarters||New York, NY, USA|
|Key people||Katharina Harf, Peter Harf|
|Employees||30 (November 2009)|
Delete Blood Cancer DKMS is a non-profit 501(c)(3) organization that registers potential donors to enable bone marrow and stem cell transplants needed by patients fighting blood cancer and other diseases. It was founded in 2004 in New York City by Katharina Harf and her father Peter Harf as an extension of DKMS, a German bone marrow donor center. With additional branches in the United Kingdom, Poland and Spain, DKMS is today the world’s largest bone marrow donor center.
True to its name, Delete Blood Cancer works everyday to erase blood cancer by connecting potential bone marrow donors with patients who need bone marrow transplants to survive. The organization works with families, communities and organizations to host donor drives with the goal of finding every patient in need of a transplant a matching donor to give them a second chance at life. When one of its registered donors becomes a match, Delete Blood Cancer arranges the donation procedures. The organization also transports cells donated by German donors matched with U.S. patients.
The story of Delete Blood Cancer begins with the Harf family in Germany. In 1990, Mechtild Harf, mother of two daughters and wife of Peter Harf, then Chairman of COTY, Inc., was diagnosed with a rare blood cancer. She would need a bone marrow transplant to survive. That meant finding a compatible donor—a “genetic twin”— to donate bone marrow. At the time, there were only 3,000 registered bone marrow donors in Germany, none of whom was a match for her.
Determined to find a match, the Harf family canvassed the country to register more donors. In just one year, they registered 68,000 people. Unfortunately, Mechtild did not survive. In her honor, her husband Peter partnered with renowned hematologist Professor Gerhard Ehninger to create Deutsche Knochenmarkspenderdatei (DKMS) in 1991. The name translates to English as “German Bone Marrow Donor Center.”
In 2004, Peter Harf’s youngest daughter Katharina joined her father to start DKMS Americas in New York City. Working with a small team, she gradually built DKMS Americas into a national organization. By the end of 2012, DKMS Americas had recruited more than 360,000 donors and facilitated nearly 1,000 transplants in the U.S. To reflect the growth and better express its mission to the American public, the organization changed its name to Delete Blood Cancer DKMS.
In March, 2013, Delete Blood Cancer DKMS celebrated its 1,000th donation.
Credentials & Affiliations
Delete Blood Cancer is licensed by the New York State Department of Health and is registered with the U.S. Food and Drug Administration. It is an accredited bone marrow donor center with the Be The Match Registry® operated by the National Marrow Donor Program. As part of the larger DKMS family, it is also affiliated with the World Marrow Donor Association and Bone Marrow Donors Worldwide.
Blood Cancer & Bone Marrow Transplant Statistics
In the U.S., a person is diagnosed with blood cancer approximately every 4 minutes. And approximately every 10 minutes, someone dies. Blood cancer is the second leading cause of cancer deaths and kills more children than any other disease in the U.S. Every year, more than 12,000 patients in the U.S. are diagnosed with blood cancers and other diseases including Sickle Cell Anemia and Fanconi Anemia for which a bone marrow transplant may be their only hope of a cure. Approximately 70% of patients will have to rely on a perfect stranger to provide bone marrow or stem cells. Currently, about half of those in need of a transplant will get one.
Registering Potential Donors
Delete Blood Cancer registers new potential bone marrow donors through drives hosted in partnership with patients and organizations as well as online at deletebloodcancer.org. There is no cost to register. Potential registrants must be between the ages of 18-55 and in general good health. The registration process includes educating each person about the bone marrow donation process, screening for eligibility and commitment, filling out a registration form and swabbing the cheeks to collect cells for tissue typing. Tissue typing determines a registrant’s human leukocyte antigen (HLA) profile, which is used in matching with patients.
The Need for Greater Donor Diversity
Most patients in need of a bone marrow transplant find a matching donor in someone who shares their ancestry. Currently, the composition of the national donor pool does not reflect the diversity of the American population. Delete Blood Cancer is launching several initiatives focused on encouraging African Americans, Latinos/Hispanics, Asians and Jews to register as potential bone marrow donors to help save more patients from those communities.
When a person who registered with Delete Blood Cancer is selected as a match and is asked to donate, Delete Blood Cancer DKMS assists them by arranging all further medical testing and any potential travel arrangements. After donation, Delete Blood Cancer follows up with the donor for up to a year and also facilitates anonymous communication between the donor and patient if both parties have agreed to contact. The medical and related travel costs of donation are covered by the patient’s insurance and by Delete Blood Cancer.
Two Ways to Donate
There are two ways to donate. The patient’s doctor selects the method that promises the best outcome for their patient.
In 75% of cases, cells are collected via the bloodstream in an apheresis procedure called Peripheral Blood Stem Cell collection. This method involves drawing blood from one arm and passing it through an apheresis machine that separates out stem cells and then returns the rest of the blood back to the donor through the other arm. The procedure generally lasts 6-8 hours over the course of 1-2 days. On the five days leading up to the procedure, the donor receives daily injections of filgrastim to boost their stem cell production.
In 25% of cases—generally when the patient is a child—bone marrow is collected from the back of the pelvic bone through an outpatient surgical procedure performed under anesthesia. Doctors use a special syringe to remove liquid marrow containing blood stem cells. The procedure generally takes 1-2 hours and most donors are discharged the evening after donating.
Recovery times depend on the individual donor and type of procedure. Most donors return to regular work and school routines within one to seven days after donation.
After either procedure, donated cells are transported to the patient’s located and infused into their bloodstream within 1-2 days. The donor’s own stem cells completely replenish within 3-6 weeks.
Delete Blood Cancer DKMS is the operating name of DKMS Americas, a 501(c)(3) non-profit, non-government-funded organization. It’s donor registration efforts and the costs of tissue typing each new donor (approx. $65 per person) are largely funded by individual and corporate contributions.
The organization’s fundraising efforts include online giving, mobile giving, corporate sponsorships, annual campaigns and an annual spring gala that draws a high-profile crowd from the worlds of entertainment, fashion and business. This event, started in 2006, includes an inspiring moment when a donor and surviving patient meet for the first time.