Tag Archives: HIV/AIDS

A Weekly Advocacy Message from Mary Woolley: Time for Thanks (and) Giving

Dear Research Advocate:

Mark your calendar for two important days next week: First, next Monday, Dec. 1, is World AIDS Day. Check out our updated fact sheet, which provides a snapshot of HIV/AIDS and the transformative impact of HIV/AIDS research.  I especially hope that you will take the time to read the profile of Maria Davis, an individual living with HIV who works to help others with, or at risk of contracting, the disease.

When I think of what I’m thankful for, people like Maria are high on my list.  Which leads me to another reason to express gratitude, this time to the many organizations and individuals who participated in Public Health Thank You Day (PHTYD) on Nov. 24.  Research!America established this day of thanks to commemorate individuals like Maria whose profession or avocation is in the public health arena.  Participation this year was truly remarkable, with more than 750 tweets about #PHTYD (including a tweet from the Acting U.S. Surgeon General!) that reached over 1.7 million Twitter users.

But back to the future: the second key date is Giving Tuesday (Tuesday, Dec. 2). This day, shared on social media using the hashtag #GivingTuesday, serves as a national reminder to make charitable donations to the causes you value.  I hope you will consider making a contribution to Research!America and asking your networks to do the same.  Thanks to the generosity of an anonymous donor, the contributions you make in December will be matched one for one, up to $15,000.

Why donate to Research!America? Because every single minute of every single day, Americans are losing loved ones to deadly and disabling diseases that should be part of our past, not our future.  If our nation rallies behind U.S. research & development instead of neglecting it, lethal threats like Alzheimer’s, cancer, multiple sclerosis, post traumatic stress disorder and muscular dystrophy don’t stand a chance.  By engaging the public, partnering with the R&D community, and making enough noise to get the attention of the White House and Congress, we can speed medical progress and save lives. Click here for a testimonial that truly puts this cause into perspective.  And please don’t hesitate to stop by our website: www.researchamerica.org or contact Carol Kennedy at ckennedy@researchamerica.org or 703-739-2577 for more information on our work.

I hope you’re able to spend a few well-deserved days off this week with loved ones. A Happy Thanksgiving to you and yours,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: A long letter with timely news

Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) — one of the most effective and dedicated champions of medical and health research ever to serve in public office — introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December.  Continue reading →

World TB Day

PrintToday is World TB Day.

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.

A Weekly Advocacy Message from Mary Woolley: No rest during “recess”!

Dear Research Advocate:

Yesterday, President Obama tweeted about the effects of sequestration on medical research. From @barackobama, “The #sequester is slowing the pace of medical research, delaying the discovery of cures and treatments. Read more.” It is terrific that the president is helping drive increased attention to medical research. Our thanks to him and also to all who have joined our Memorial Day recess week of social media advocacy. The American Heart Association posted this great image to its Facebook page; we also thank Society for Neuroscience, BIO, The Endocrine Society, Melanoma Research Alliance, University of Maryland School of Medicine, CURE Epilepsy and UPenn Science Policy — among many others — who have participated. Now it’s your turn; let’s kick this campaign into high gear as we wrap up the week!

We know from our regularly commissioned polls that Americans value the work of our taxpayer-supported health agencies. In a recent Gallup poll, the CDC received the best reviews among 10 federal agencies surveyed. Take advantage of this news hook to translate public support into policy-maker action. CDC funding has been subjected to budget cut after budget cut, compromising the agency’s ability to safeguard the health of Americans against pandemics, bioterrorism, drug-resistant strains of infectious disease, and other predictable and unpredictable public health threats. Everyday Americans appear to value CDC more than our policy makers do. Tell your elected representatives: Let’s get past this disconnect; stand up for the CDC.

Research!America has been highlighting the importance of tackling global killers like HIV/AIDS, malaria, TB and neglected tropical diseases (NTDs) during USAID’s Global Health Month. Elected officials and the policy media are often surprised to learn that global health research and development is an integral part of the public and private sector-funded research enterprise in this country. The National Law Review’s coverage (article) of global health has highlighted Research!America’s Top 10 Reasons Why the U.S. Should Invest in Global Health Research & Development. Check it out, and if it whets your appetite for more, take a look at our video about NTDs. Typically not thought of as a problem in the U.S., NTDs are now a significant threat here. We simply must put research to work to stay ahead of the curve — to help our international friends and to maintain health and prosperity at home.

Sincerely,

Mary Woolley

Health and Economic Returns on Science and Innovation Investments for Global Health

by Morgan McCloskey, Global Health Intern and Ellie Dehoney, Vice President of Policy and Programs at Research!America. This entry was originally posted as a guest contribution to the USAID IMPACT Blog. 

Doctor prepares malaria treatment. Photo credit: IMAD

In the past decade, U.S. investments in science, technology and innovation have led to critical breakthroughs in prevention, diagnosis and treatment of deadly global diseases. We now have a meningitis vaccine for African populations, a new test that can quickly diagnose drug-resistant TB and promising data indicating that a vaccine could prevent HIV infection. We have developed desperately needed new drugs for neglected diseases and have determined pathways to expand access to treatment for millions through programs like PEPFAR and USAID’s Neglected Tropical Disease (NTD) program. Continue reading →

Update: “Functionally Cured” of HIV

A few weeks ago, we wrote about a Mississippi toddler who was “functionally cured” of HIV. Now, there is one more reason to celebrate: French researchers identified 14 adults who have been functionally cured of HIV as well. The adults received antiviral treatment within a few months of infection, but all stopped treatment at some point for a variety of reasons. Despite discontinued treatment, researchers found that these adults had extremely low levels of HIV and that their immune systems were controlling the infection without drugs. Although further research is necessary, scientists hope that other adults may be able to cease antiviral treatment and live healthily without drugs. This story is another crucial step in the global fight against HIV/AIDS and represents the importance of continued research investments to discover innovative cures for HIV.

—Morgan McCloskey, global health intern

Researchers develop nanoparticles to kill HIV with bee venom

New research from Research!America member Washington University School of Medicine in St. Louis  shows that a component of bee venom can be safely used to target and kill HIV virus particles while leaving human cells intact. The compound, called melittin, punches holes in the outer protective coat, or “envelope,” of viruses, including HIV. Researchers modified the nanoparticle to protect human cells from the toxin by adding “bumpers” to prevent the toxin-laden particles from fusing with cells, yet the smaller virus particles are able to fit between these bumpers and interact with melittin.

The lead author on the study, Joshua L. Hood, MD, PhD, says that application of this new compound should be highly effective in preventing new infections and controlling existing infections, particularly in HIV strains that are resistant to current therapies.

“We are attacking an inherent physical property of HIV,” Hood said in an article from the WUSTL Newsroom. “The virus has to have a protective coat,” making it theoretically impossible for the virus to adapt to the toxin and become resistant to a therapy based on melittin. Researchers say that this nanoparticle can be administered through a vaginal gel to prevent new infections or intravenously to control existing infections.

This new research, funded by the Bill & Melinda Gates Foundation, gives new life to the nanoparticle that was originally developed as an artificial blood product. Though the particle “didn’t work very well for delivering oxygen … it circulates safely in the body” and can be adapted to fight many kinds of infections or disease processes, according to Hood’s interview with WUSTL. These early findings are based on work done in a cell-based research system but show great promise for clinical trials. Hood and his colleagues are confident that these nanoparticles could be easily manufactured in large quantities to make clinical trials possible. Read more about this study in the Huffington Post or see the original scientific article, published in Antiviral Therapy.

Advances in biomedical research like this study are at risk of losing funding under sequestration, which took effect March 1. And with these across-the-board cuts to federal research agencies, clinical trials with this nanoparticle antiviral compound or other promising drugs may not happen. Without basic science research into novel therapeutic strategies or mechanisms of disease, potential cures for deadly disease will remain elusive.

-by Megan Kane, Communications Intern 

A Weekly Advocacy Message from Mary Woolley: Don’t Settle for the “New Normal”

Dear Research Advocate,

Yesterday, the House passed a budget for the remainder of the fiscal year that includes this year’s cuts from sequestration along with an additional one percent across-the-board cut.  The bill now heads to the Senate for consideration, where we are likely to see higher funding levels than the House version, but with sequestration still in place. Congress seems anxious to avoid the brinksmanship and the government shutdown threats that have characterized past debates. While the less rancorous environment surrounding the CR is a welcome change, the complacency around sequestration is not.  As research advocates, we cannot let these cuts stand.

Sequestration isn’t a one-year cut, it is ten years worth of cuts, none of which are evidence-based.  We may be looking at the early stages of an elusive “grand bargain” as the president meets with Republican senators to discuss tax and entitlement reform – two key pieces for solving the deficit puzzle. Eliminating sequestration must be part of that bargain. In addition, we must ensure that funding for biomedical and health research, including the resources FDA needs to do its job, are assigned a high priority in fiscal year 2014. That should be reflected in the budget resolution and obviously in the FY 2014 funding bill.

None of this will be easy. Working together, advocates have raised the profile of medical research with policymakers and the media. We need to turn the volume up louder yet on it, while cultivating more champions in Congress.  Continuing to engage the media is part of that equation.  Some of the largest news outlets in the country including Fox News, NBC, and CBS, and a number that are new to our issue including Al Jazeera quoted Research!America when writing about sequestration’s impact on science. The Economist published a thoughtful piece about how cutting American health research will harm the world. Industry is adding its voice with an op-ed in Forbes coauthored by three legendary executives, including Research!America board member and former NIH director, Dr. Elias Zerhouni, Marc Tessier-Lavigne of The Rockefeller University and P. Roy Vagelos, Chairman of Regeneron Pharmaceuticals. I also want to highlight a letter that Dr. Herb Pardes, Executive Vice Chairman at New York Presbyterian and Research!America board member, sent to the President.  He captures the very themes that will anchor our advocacy going forward.

At the same time as policymakers were cutting federally funded research dollars, researchers were delivering another astonishing breakthrough – the real possibility of a functional cure for HIV. This remarkable achievement, bringing us a step closer to a world free from the scourge of HIV/AIDS, would not have been possible were it not for NIH funding that supported the research and development of anti-retroviral drugs. The CDC is also in the news, with troubling warnings about the spread of “nightmare bacteria” – germs that can be deadly because they are resistant to traditional medicines.  As CDC works to track and halt the spread of these germs and fulfill the numerous other public health functions for which they are responsible, the agency is not only contending with sequestration. Over the past several years, CDC has been subject to some of the deepest cuts of any health agency. Our Nation is fast approaching a tipping point.  Are public health and safety and the progress borne of medical innovation priorities, or not?

As many of you already know our annual events are coming up next week! Please join us for the Annual Meeting (free of charge to members) to hear remarks from Rep. Joe Kennedy (D-MA), a freshman member of Congress who is already championing research, and also John Crowley, CEO of Amicus Therapeutics. I hope to see you all at our Annual Advocacy Awards Dinner later that evening – seats are selling fast, but still available.

Sincerely,

Mary Woolley

Updated: Sequestration impact on federally funded research programs

Just released data from the White House Office of Management and Budget (OMB) details the final amount to be cut from federal research program budgets as sequestration goes into effect. The full details are available on the updated Research!America sequestration fact sheet, though previous projections were relatively accurate as compared to these final numbers.

Cuts to the Centers for Disease Control and Prevention and the Food and Drug Administration will be higher than previously expected, with a combined loss of $593 million dollars for FY13. That amount is roughly equivalent to ensuring the safety of new medical and biological products at the FDA and programs that focus on prevention of HIV/AIDS at CDC. The National Institutes of Health will lose more than $1.5 billion this year alone, enough to fund three major research programs at the National Cancer Institute. The National Science Foundation will lose $290 million, an amount that would almost fully fund the NSF budget for materials research, which includes studies on biomaterials and metallic nanostructures.

Toddler “functionally cured” of HIV

On March 4, NIH-supported investigators reported the first ever “functional cure” of HIV in a toddler in Mississippi. The child received antiretroviral drugs within hours of birth and continued on the drugs for 18 months, when treatment was stopped. Despite discontinued treatment, the toddler no longer had detectable levels of HIV when seen by medical professionals 6 months later. Subsequent tests confirmed that the child had indeed been “functionally cured” of HIV. Although more research is necessary to see if these results can be duplicated, scientists believe this provides hope for the hundreds of thousands of children born with HIV each year. NIH funding not only supported investigators involved in monitoring the child, but also played an instrumental historical role in developing the antiretroviral drugs that were used to cure the child.  We are one step closer to a world free from HIV.

In light of this breakthrough, it is disturbing and sadly ironic that Congress and the White House on Friday permitted federal funding for biomedical research to be cut — after years of sustained or increased funding – as part of sequestration.  How much progress will be squandered if these cuts, and the indifference to American priorities they exemplify,  aren’t reversed?

GHTC Briefing Highlights Importance of Federally Funded Global Health Research

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Research!America’s booth at GHTC briefing

On February 26, the Global Health Technologies Coalition held a Capitol Hill briefing, “Renewing US leadership: Policies to advance global health research.” The briefing included displays from global health nonprofits, the launch of GHTC’s fourth annual policy report as well as a panel discussion. Panelists included Dr. Lee Hall, Chief of Parasitology and International Programs at NIAID, Dr. Alan Magill, Director of Malaria at the Gates Foundation and Dr. Caroline Ryan, Deputy Coordinator for Technical Leadership at PEPFAR. Each highlighted key U.S. contributions to global health including the development of a rapid TB diagnostic, advances in HIV/AIDS treatment and delivery through PEPFAR and a new treatment for leishmaniasis developed in part by researchers at the Department of Defense.  Speakers pointed out that many of these medical breakthroughs were accomplished through leveraging U.S. government funding and working in public-private partnerships. All speakers expressed concern that cutting federal funding for global health research could jeopardize progress for these lifesaving tools.

In particular, Alan Magill warned of “breaking something that will be very difficult to put back together.” Speaker and moderator Lisa Cohen, Executive Director of the Washington Global Health Alliance, wrapped up the session citing Research!America poll data and reminding us that there is incredible support for this work – we just need to connect the dots for decision makers and funders. “78% of Americans think it is important to support global health research – we don’t think about this but when Americans are asked, it is clear that people care about these issues.”

Morgan McCloskey, global health intern

Statement from Research!America President and CEO Mary Woolley on Passing of Dr. C. Everett Koop

February 26, 2013

The Board of Directors of Research!America joins me in extending our deepest condolences to Dr. C. Everett Koop’s family, friends and colleagues as we mourn the passing of a visionary leader and champion of medical research. Dr. Koop was well-respected and revered by scientists, the public health community and the public at large, thanks to his unceasing commitment to strengthening government support for research to address health threats. As U.S. Surgeon General, he was known as “America’s Family Doctor.” Notably, by promoting fitness and raising awareness of disease prevention and immunization, he encouraged individuals to take an active role in their health. Koop’s innovative thinking saved lives and improved quality of life for many Americans as he sounded the alarm on the deadly health effects of smoking and the most challenging health issues of our time, making an extraordinary commitment to raising awareness about, and determination to combat, HIV/AIDS. After serving two terms as Surgeon General, Dr. Koop was named honorary director of Research!America. In 1994, he partnered with us to create a widely viewed national public service campaign in support of medical research. Nearly 20 years later, the campaign is still recognized for its impactful message that “insufficient medical research can be hazardous to your health.” His leadership served to elevate the importance of research and public health in our national conversation with unparalleled success. His legacy is second to none.

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Report Highlights Need for More R&D Funding for Neglected Diseases

On December 3, Policy Cures released its fifth annual G-FINDER report, a comprehensive survey of funding for research and development for neglected diseases. The report tracks global public, private and philanthropic investments into R&D for 31 diseases, including HIV/AIDS, tuberculosis, malaria and NTDs.  In positive news, this year’s report shows that total funding has actually increased by $443 million since 2007.

The report demonstrates that government funding, which accounts for over two-thirds of all investment, is increasingly going toward basic academic research, rather than product development. Research!America believes it is vital that the entire research pipeline be fully funded. Basic research will help us understand the best ways to tackle these neglected diseases and give us a better understanding of disease and the human body.  However, we also need robust funding for the development of urgently needed tools like drugs, vaccines and diagnostics. This urgency is worsened by the fact that private and philanthropic investments in product development for NTDs have also decreased.

Because NTDs disproportionately affect the “bottom billion” or individuals earning less than $1.25 per day, there is essentially no market demand for new NTD tools, so the private sector is unlikely to fund these projects. Dr. Moran, director of Policy Cures, believes that governments must step up to the plate, saying that “if [governments] want products for neglected diseases, they must fund product development as well as basic research.”

-Morgan McCloskey, global health intern

World AIDS Day

Each year on World AIDS Day, December 1, the world unites in the fight against HIV. It is estimated that 34 million people around the world are living with HIV and over 25 million people have died from the disease since 1981. The good news is that strong investments in HIV/AIDS research have resulted in remarkable scientific advances such as new prevention tools and drugs that allow individuals to manage their disease. However, there is still much more work to be done and World AIDS Day highlights the need for continued investments in research, education and improved access to treatment. It is also important to raise awareness of another category of diseases that can undermine efforts to eliminate HIV: neglected tropical diseases (NTDs).

NTDs affect over 1.4 billion people and there is significant overlap between NTD and HIV infection in many areas of the developing world. For example, females with schistosomiasis in Africa have a nearly 3-fold risk of HIV infection. Co-infection with HIV and NTDs like leishmaniasis or hookworm can dramatically worsen symptoms and speed up the progression of HIV to AIDS.

Advances in HIV/AIDS prevention and treatment have proven the incredible power of research to save lives and we must not retreat on our progress in the face of scientific advances. Funding for global health research and development that includes the advancement of new and improved tools against NTDs and HIV/AIDS will yield multiple benefits for our health. Smart and steady investments in global health R&D will help us realize our shared visions of a generation free from these debilitating diseases.

-Morgan McCloskey, global health intern

One Voice for Global Health

When advocates speak with one voice, amazing things can happen. Here in the U.S., with help from high-visibility breast cancer advocates, the federal budget for breast cancer research has increased nearly eight-fold over a 20-year span. More recently, the National Alzheimer’s Project Act redoubles public efforts to find a cure for this devastating disease.

The fight against AIDS stands as perhaps the most telling example of the power of advocacy. The voices of so many, amplified by entertainment heavyweights, have helped shine a light onto efforts at combating the disease, from prevention to treatment.

Research, of course, plays no small part in either area, from the tantalizing goal of a vaccine to the antiretrovirals that have turned an HIV diagnosis from a death sentence into a manageable chronic disease. And one panelist at AIDS 2012 – going on this week in Washington, DC – sees research as an entryway into advocacy.

“Research is an opportunity to build sustainable advocates behind one voice for global health,” said Prince Bahati of the International AIDS Vaccine Initiative.

Research brings together diverse constituencies: It pushes the frontiers of scientific knowledge, it improves health around the globe and it positively affects local economies.

But one word in his statement is not to be minimized: “opportunity.” Research, and the people who perform research, cannot be the sole voice; instead, research becomes a gateway to help build out the advocacy community. A full – and full-throated – advocacy community has the chance to change the world.

Part of that diversity was on display all week at the conference: Veterans groups and faith-based organizations were among the constituencies represented.

Those many, diverse voices are needed now more than ever. The U.S. contribution to AIDS research is significant, but there are no priorities in the current political climate. Christine Lubinski of the Infectious Disease Society of America (IDSA) encouraged the audience to do its homework before meeting with congressional offices. She cited Research!America’s economic impact work, saying that we must try to demonstrate a domestic constituency for these issues, with U.S.-based research being a clear entry point. She also gave some words of advice for those who face policy makers that say our AIDS situation is leading us into a “treatment mortgage” for 30 years: It is actually a temporary bridge until research yields a vaccine. Congress used to have similar debates regarding polio and the “iron lung,” debates that evaporated when science produced a polio vaccine.

We also know that sometimes research has unexpected and multiple benefits for worldwide health. For example, AZT was developed to treat cancer. It failed in that regard, but federally funded scientists discovered that it works for HIV/AIDS.

Research and its advocates, as part of the larger advocacy community, have a clear role to play. Each voice adds to the chorus – and we’ve seen what those voices can do.