Recently, we were informed that we as a grassroot organization, that receives no federal funding, would have to cover the cost of signing up bone marrow donors. Considering, we established NJ Bill A2168/S2038 - Jaden's Law, we have increased awareness about bone marrow and umbilical cord blood donation within various ethnic communities through out America and the world with the help of various celebrities and major networks.
In 2010, we were informed that the only way we could become a recruitment group for BE THE MATCH we would have to register 1500 donors for the year as a volunteer recruitment group for three years. Even though, we established legislation including the NMDP. We were emailed paperwork, that was different from what our boardmember Akiim DeShay found on their website. In addition in 2010, through various groups we were able to do so, however, we were informed that did not count. In addition, we worked with groups that were compensated for our efforts, meaning BE THE MATCH recruitment groups are paid per donor, which was unknown at the time, but we later found out.
In early 2011, after our appearance on BET we received thousands of calls from potenital donors, BE THE MATCH recruiters, emails and post that our appearance helped them with registering or signing up donors to register. However, we later found out our organization would not receive any credit for doing so, because we were NOT a recognized recruitment group for BE THE MATCH. Therefore, we decided to work with LINK TO LIFE NETWORK, INC (The only African-American Recruitment group for BE THE MATCH). While we thought this would be a perfect partnership and assist in increasing awareness within the African-American and various ethnic communities, unfortunately found out later, it was not in the eyes of BE THE MATCH. This partnership would consist of two minority underrepresented groups coming together and would mean the ability to recruit more ethnic donors, in addition to, increasing the available donors for various ethnic patients in need. Rationally, this would be something good, unfortunately, the result was LTLN funding was cut, which led to only allowing Preserve Our Legacy the ability to register 100 donors for free, anything over 100 we would have to pay $100 per donor, no matter if they are from the priority underrepresented Ethnic groups or Caucasian. However, based on the goal imposed by BE THE MATCH, which we are required to register 1500 people a year to become recognized by BE THE MATCH. While we understand that the economy has made it hard for not-for-profits, however, there are four recruitment groups based in New York State including LTLN, Inc. and LTLN receives the least amount of funding and recruitment goals of the four. Some groups are allowed funding and the ability to recruit 40,000 individuals in one year, while LTLN receives less than 1000 for the year. Even though they are the ONLY African-American recruitment group. New Jersey bill A2168/S2038, Jaden's Law, is historically the only legislation that speaks about educating individuals about bone marrow and peripheral blood stem cells (PBSC). Therefore, we are confused why we could not receive additional funding and increased recrutiment goals to assist in increasing the numbers of the underrepresented. The federal funding states these minority groups should be made priority. Here is part of the legislation H.R. 2520:
(e) Bone Marrow Recruitment; Priorities; Information and Education-
(1) RECRUITMENT; PRIORITIES- The Program shall carry out activities for the recruitment of bone marrow donors. Such recruitment program shall identify populations that are underrepresented among potential donors enrolled with the Program. In the case of populations that are identified under the preceding sentence:
(A) The Program shall give priority to carrying out activities under this part to increase representation for such populations in order to enable a member of such a population, to the extent practicable, to have a probability of finding a suitable unrelated donor that is comparable to the probability that an individual who is not a member of an underrepresented population would have.
(B) The Program shall consider racial and ethnic minority groups (including persons of mixed ancestry) to be populations that have been identified for purposes of this paragraph, and shall carry out subparagraph (A) with respect to such populations.
Therefore, for 2012 if we want to become a recruitment group for BE THE MATCH, we will have to cover 1400 individuals that we register in the amount of $140,000. Unfortunately, due to this new financial burden imposed to us, we will not be able or it will be difficult to register bone marrow donors!
Therefore, we are asking for financial support from our community to help cover these expenses as well as speaking to your local legislator, congress person, city council person or political leader to help us!!
If you are interested in assisting or interviews, please contact me shana.melius@preserveourlegacy.org or visit our website: www.preserveourlegacy.org.
Tuesday, January 3, 2012
HAPPY NEW YEAR 2012 - NEW ACTIONS...BONE MARROW DONORS COMPENSATED
HAPPY NEW YEARS FROM THE PRESERVE OUR LEGACY FAMILY!
I hope everyone obtained what they wanted for the holidays. I wanted to wait until after the holidays to discuss what has been an extreme topic from numerous of individuals that know the work that is done by our company. In December, the 9th circuit panel of three judges voted unanimously to overturn the ruling of the NOTA of bone marrow donors not being compensated.
According to the 9th circuit panel, due to new medical techniques, now,there is an essentially risk-free technique — called apheresis — for obtaining the stem cells not from hip bones but from the arms — the bloodstreams — of donors as they rest for six or so hours in a recliner (retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579).
From our perspective and our relationship with Kumud Majumder, we, as an organization, believe that compensation, will definitely increase the level of survival for patients in need. However, many must understand the odds of being a match are still very slim due to the limited number of donors from various ethnic communities. Presently, five ethnic groups, Hispanic, African-Americans, Asians, Pacific Islanders, American Indians are comprised between 28-31% of the National Registry for bone marrow & Umbilical cord blood donation, while Caucasians are between 61 to over 70% of the registry for bone marrow and umbilical cord blood donors. These staggering percentages have been in the same variation for over 20 years (since 1991 joining all groups together for National Efforts). Those from various ethnic diverse groups have increased the least, this is why my husband and I started Preserve Our Legacy to try to make a difference and increasing awareness in such ethnic communities and establish Jaden's Law throughout America.
This new ruling would possibly encourage more individuals to sign up, in hopes of being compensated. Although it is not a direct cash payment, it can be in a form of scholarships, housing allowances, or contributions to charities chosen by donors. The program would initially target potential minority and mixed-race donors who are likely to have marrow cell types that are the most difficult to match(retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579). Some believe this would be a wrong motive, however, in the possibility to save anothers life, what other option can be applied. Many are familiar with Jaden's story. In 2006, there was only 4% available for African-Americans. Imagine if this ruling pertaining to NOTA was established, maybe Jaden would be here today, along with the thousands that have lost their lives.
We just want people to be aware that you still have to be a genetic match in order to be a donor. The more ethnic people that register the better the odds of someone finding a match.
Preserve Our Legacy, Inc. has a lot on the horizon for 2012! Branching the Preserve Our Legacy Umbilical Cord Blood program to different states, establishing Jaden's Law in other states, and MUCH MORE to come. For more information about us: www.preserveourlegacy.org
I hope everyone obtained what they wanted for the holidays. I wanted to wait until after the holidays to discuss what has been an extreme topic from numerous of individuals that know the work that is done by our company. In December, the 9th circuit panel of three judges voted unanimously to overturn the ruling of the NOTA of bone marrow donors not being compensated.
According to the 9th circuit panel, due to new medical techniques, now,there is an essentially risk-free technique — called apheresis — for obtaining the stem cells not from hip bones but from the arms — the bloodstreams — of donors as they rest for six or so hours in a recliner (retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579).
From our perspective and our relationship with Kumud Majumder, we, as an organization, believe that compensation, will definitely increase the level of survival for patients in need. However, many must understand the odds of being a match are still very slim due to the limited number of donors from various ethnic communities. Presently, five ethnic groups, Hispanic, African-Americans, Asians, Pacific Islanders, American Indians are comprised between 28-31% of the National Registry for bone marrow & Umbilical cord blood donation, while Caucasians are between 61 to over 70% of the registry for bone marrow and umbilical cord blood donors. These staggering percentages have been in the same variation for over 20 years (since 1991 joining all groups together for National Efforts). Those from various ethnic diverse groups have increased the least, this is why my husband and I started Preserve Our Legacy to try to make a difference and increasing awareness in such ethnic communities and establish Jaden's Law throughout America.
This new ruling would possibly encourage more individuals to sign up, in hopes of being compensated. Although it is not a direct cash payment, it can be in a form of scholarships, housing allowances, or contributions to charities chosen by donors. The program would initially target potential minority and mixed-race donors who are likely to have marrow cell types that are the most difficult to match(retrieved from http://www.newsmax.com/GeorgeWill/Bone-Marrow-Donors-Compensated/2011/12/30/id/422579). Some believe this would be a wrong motive, however, in the possibility to save anothers life, what other option can be applied. Many are familiar with Jaden's story. In 2006, there was only 4% available for African-Americans. Imagine if this ruling pertaining to NOTA was established, maybe Jaden would be here today, along with the thousands that have lost their lives.
We just want people to be aware that you still have to be a genetic match in order to be a donor. The more ethnic people that register the better the odds of someone finding a match.
Preserve Our Legacy, Inc. has a lot on the horizon for 2012! Branching the Preserve Our Legacy Umbilical Cord Blood program to different states, establishing Jaden's Law in other states, and MUCH MORE to come. For more information about us: www.preserveourlegacy.org
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