Excerpt of a blog post by Dr. Tom Insel, Director of the National Institute of Mental Health.
The Research!America awards dinner is like a lot of DC galas, complete with members of Congress, celebrities, and speeches to honor those who have contributed to a cause. For Research!America, the cause is biomedical research and this year, as in each of the past 25 years, there were honors bestowed on advocates for cancer and rare diseases. Kathy Giusti, diagnosed with multiple myeloma in 1998, spoke passionately about the lack of research on this blood cancer and her singular fight to create a registry and clinical trials, leading to new treatments that have extended her own life and the lives of many others well beyond all predictions. The parents of Sam Berns, an icon for the rare disease progeria, spoke of their son’s commitment to find a cure for this disorder in which children age rapidly and die early. Sam died last month at age 17, but during his brief life, and partly through his efforts working with the world’s foremost genetics labs, the genetic cause was found and new treatments were developed that will almost certainly extend life for others with this rare mutation (see Sam’s inspirational Ted talk ).
For me, what made this event different from previous years was the recognition of advocates for people with mental illness. The actress Glenn Close was recognized for co-founding BringChange2Mind, a campaign to reduce negative attitudes toward those with mental illness. In her eloquent remarks accepting the award, Glenn introduced her sister, Jessie Close, and her nephew, Calen Pick, who each battle serious mental illness. Jessie has struggled with bipolar disorder and Calen with schizophrenia.
When Glenn invited Jessie and Calen to make a few remarks, the evening really became historic. Together, they described a journey undertaken with Deborah Levy and her colleagues at McLean Hospital and elsewhere over the past 3 years. The research team found that Calen and Jessie shared a rare genomic copy number variant resulting in extra copies of the gene for glycine decarboxylase. This gene encodes the enzyme that degrades glycine, a key modulator of the NMDA receptor, which has been implicated in psychosis. Having extra copies of this gene, it seemed possible that Jessie and Calen would be deficient in glycine, with less activity of the NMDA receptor.
Read the full post here.
On March 25, Research!America submitted testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and related agencies concerning FY15 appropriations for the National Institutes of Health, Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality:
The National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Agency for Healthcare Research and Quality (AHRQ) play pivotal roles in combating disabling and deadly health conditions. Moreover, the funding, or lack of it, allocated to these agencies will bear on our nation’s ability to compete in key export markets within the global economy, foster business development that grows and maintains jobs across the country, meet our solemn obligations to wounded warriors and support troops on the ground, combat deadly medical errors, and protect our nation against pandemics and emerging health threats. The stakes truly are that high.
Read the full testimony here.
It is a day that gives us each the space to better understand the magnitude of the TB threat, mourn the loss of the more than 1 million people worldwide who die of TB each year, recognize the tragic consequences for their loved ones and for economic stability in impoverished nations, and express gratitude for those who conduct TB research, finance and deploy on-the-ground interventions, and advocate for the resources needed to conquer this vicious killer.
TB is the second most common cause of death from infectious disease, after HIV/AIDS. In 2012, approximately 8.6 million developed TB and 1.3 million died from the disease, with the death rate particularly high among HIV-positive patients.
There is good news on the TB front: infection rates have been falling for a decade and the mortality rate has dropped 45% since 1990. These results are in line with the millennial development goals, which set TB control metrics for 2015. Unfortunately, progress against other targets is lagging, including a slower than hoped for reduction in the prevalence of active TB and highly disappointing results in the diagnosis and treatment of multi-drug resistant TB (MDR-TB).
In the US, it’s far too easy — and a dangerous mistake — to dismiss the significance of tuberculosis. It is true that gone are the days when TB was prevalent in the US, the days when Americans were quarantined to reduce the infection rate and sent to sanitariums for treatment that sometimes worked…and too often didn’t. But with global travel, TB is entering our country, and with drug-resistant forms of the infection spreading, American lives are at risk. There have even been cases reported of totally-drug resistant TB, which means that resistance has been detected in every known treatment. The implications of an outbreak of totally drug resistant TB in the US are as ominous as they are in developing countries, particularly for those with compromised immune systems.
So what’s next? Our role as a global leader and our identity as a compassionate people underscore the importance of robust American support for the Global Fund to Fight AIDS, Tuberculosis and Malaria, as well as robust appropriations for USAID and other on-the-ground efforts to combat TB. For sake of Americans and the global community, the National Institutes of Health and the Centers of Disease Control and Prevention must be resourced sufficiently to develop new TB treatments, identify new prevention strategies, and assist in global TB control.
And it is important to acknowledge philanthropic and private sector efforts to combat TB, including the work of RESULTS, the Gates Foundation, and companies such as Johnson and Johnson.
When 1.3 million people die each year from an infectious disease that poses a renewed threat to the United States, waging war against that disease is not an option, it is an imperative.