Inaccurate and misleading information has been circulated that accuses NAAR of being influenced by the pharmaceutical industry. These statements are simply false.
No company or organization of any kind - pharmaceutical or otherwise - has ever attempted to influence NAAR directly or indirectly about our research programs or its results. In addition, NAAR has never solicited any pharmaceutical company about funding any specific studies. The research NAAR selects to fund is based on no one individual person, and is not influenced by any contributor.
NAAR funds and supports research that investigates all theories surrounding potential causes of autism, including whether there is a link between childhood vaccines and autism, and encourages researchers to submit proposals in this area.
All research funded by NAAR is completely independent.
Support from the Pharmaceutical Industry (as of 3/11/03)
NAAR has been accused of having a conflict of interest because we have received donations – although a very small amount – from the pharmaceutical industry.
NAAR strongly believes it does not have a conflict of interest with any pharmaceutical company or other entity with regards to any of our operations, including research, government affairs or awareness. NAAR has never used any of the limited donations we have received from the pharmaceutical industry to fund studies focusing on vaccines and autism.
For the record, NAAR has received a total of $38,700 in donations from pharmaceutical companies that do manufacture childhood vaccines, which account for 0.2% (or two-tenths of one percent)of the total funds raised by NAAR since its founding.
Of this $38,700, a total of $25,000 came from an unsolicited donation in 2000 when former Major League Baseball player Bret Saberhagen, the uncle of a child with autism, designated NAAR as his charity of choice in a Merck publicity campaign for the hair-growing medication, Propecia.
As of March 2003, NAAR has raised approximately $19.7 million in total revenues. Of that total, approximately $399,000 represents donations and employee matching gifts (from many employees who are parents of children with autism) from the entire pharmaceutical industry – or about 2% of the total funds NAAR has raised.
Our biggest donation from a pharmaceutical company – and the one that accounts for a large majority of that total – is a 1998 restricted donation of $240,000 made by Bristol Myers Squibb, which was used to specifically to fund salaries of three young researchers who were awarded NAAR autism fellowships. Interestingly, Bristol Myers Squibb does not manufacture childhood vaccines.
The remaining $159,000 of the total donations made to NAAR from pharmaceutical companies (not including the Bristol Myers Squibb donation) constitutes less than 1% of the total funds NAAR has raised –and most of those donations are from companies who do not manufacture childhood vaccines.
Of that total, $67,000 in donations to NAAR were in the form of sponsorships to Walk F.A.R. for NAAR and matching gifts made by employees, which constitute about 0.3% (or three-tenths of one percent) of the total funds NAAR has raised.
Aside from the Bristol Myers Squibb donation to support fellowships, all contributions NAAR has received by pharmaceutical companies have been unrestricted, which means that NAAR can use the donations to fund any type of research or even to cover salaries, rent or other overhead expenses.
It is highly doubtful that any other disease-specific research or advocacy organization would turn down a donation from a pharmaceutical company that is totally unrestricted in its usage and has no strings attached.
In fact, we think it would be somewhat irresponsible not to accept support from legitimate sources as we continue our quest to secure answers for children with autism and their families, especially with a historically under-funded disorder with limited resources.
Despite strikingly high prevalence, autism research remains one of the lowest areas of medical research in both public and private sectors.
Funding the Danish Study on MMR and autism
In 2001, NAAR co-funded the largest study to date focusing on the MMR (measles, mumps, rubella) vaccine and autism with the Danish National Research Foundation and the Centers for Disease Control & Prevention. The results of this Danish MMR study, published in the Nov. 7 edition of the New England Journal of Medicine, indicated no increased risk for developing autism among children who received the MMR vaccine as compared to children who did not receive the vaccine.
Some have claimed that Merck – manufacturer of the MMR vaccine – is behind this study. This claim is totally inaccurate.
In 2000, NAAR received a $25,000 donation from Merck, which was made on behalf of NAAR Honorary Board member Bret Saberhagen, who, along with other major league baseball players, participated in Merck's Hats Off Celebrity Charity Campaign. Mr. Saberhagen and the other players "competed" to see who would most benefit from using the Merck medication, Propecia - a hair-growing medication. By taking part in the contest, the players were able to designate a charity that would receive a donation in their honor made by Merck. Mr. Saberhagen chose NAAR and Merck made an unrestricted donation of $25,000 in his name to our organization. Had Mr. Saberhagen not identified NAAR as his charity, NAAR would never have received the donation. To be clear, our unrestricted donation of $25,000 from Merck in 2000 was not used to fund the Danish study – or any other vaccine-related studies.
The Danish study is an epidemiology study with a strong clinical component. This clinical component is the careful and detailed clinical assessment of the study's large patient population. In 2002, NAAR awarded an additional grant to the Danish research team to further delineate and analyze relevant clinical parameters. Careful clinical assessment is critical before raw data in any study can be included for epidemiology or statistical analysis.
The Danish study has also been criticized for not including a thimerosal component, based on a hypothesis that the MMR vaccine and thimerosal may be associated with regressive autism. While such a hypothesis may merit additional research, it does not negate the validity of the Danish study's conclusions. Peer-reviewed research cannot and should not be refuted on the basis of hypothesis.
Additional studies focusing on vaccines and autism are currently being conducted in the U.S. by the federal government, including the Centers for Disease Control & Prevention and the National Institutes of Health. The collective results from all these studies will provide a clearer picture on vaccines and autism and help the research community and the general public to develop a more accurate understanding of this controversial issue and a responsible public health policy.
NAAR's Process for Funding Autism Research Proposals, Including Vaccine Studies
Each year, NAAR receives dozens of requests for funding from researchers across North America and Europe. There are standards that all research proposals must meet to be considered for funding, including that the investigator be affiliated with an established and accredited research institution. Each of these requests is reviewed by members of our Scientific Advisory Board, which is composed of 26 scientists that represent a wide range of disciplines. This voluntary board discusses each research proposal NAAR receives and collaboratively evaluates a proposal's strengths and weaknesses and potential for contributing to a breakthrough in autism research. The board then makes a recommendation to NAAR on whether or not to fund the proposal.
In addition to the Scientific Advisory Board, NAAR's Lay Review Committee also evaluates the proposals and makes recommendations for funding. The Lay Review Committee is composed of parents and family members of children and adults with autism. NAAR's ultimate decision on what to fund is made by the Board of Trustees, which bases its decision after reviewing the recommendations of these two entities.
While we cannot predict what types of proposals we receive in any given year, NAAR supports and funds research focusing on all theories of what causes autism, including whether vaccines increase the risk for autism, and encourages researchers to submit proposals in this area.
If NAAR received a thorough, well-designed study focusing on vaccines and autism that met the standards of our peer review process and was recommended for funding by our Scientific Advisory Board, then that study would likely be funded.