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Center for Public Health and Human Rights

Director's Blog

The Center for Public Health and Human Rights is delighted to join the worldwide community celebrating the 90th birthday of His Grace, Archbishop Emeritus of Cape Town, Desmond M. Tutu. The Archbishop and his family are celebrating today as we join in honoring the extraordinary legacy of this champion of human rights, inclusion, dignity, and truth. Father has given the human family many gifts, but none perhaps more vital than his work on restorative justice—the idea of the Truth and Reconciliation Commission, which helped his beloved country, South Africa, come to terms and begin to heal from the wounds of Apartheid. There have now been many truth and reconciliation commissions, and they have shared the common theme that to heal, we must forgive, but to forgive, we must all know and recognize the truths of what we have done to others and what has been done in our names.

Dearest Father, we send you all joys on this your 90th birthday. And as a woman running a center for orphans under your patronage in Masiphumalele, an impoverished township, said to then Dean Mike Klag on a visit, “May you live forever!” You certainly will in our hearts.

Johns Hopkins School of Public Health alumna and former member of the JHSPH faculty, epidemiologist Julie Stachowiak, PhD, dedicated her professional career to improving outcomes for those who suffer from multiple sclerosis, HIV, and healthcare associated infections. However, while her professional accolades and achievements were many, she was most proud of her role as a mother and wife.

Dr. Stachowiak passed away in April of this year at age 50, after a courageous battle with brain cancer.  She was an infectious disease epidemiologist who received her doctoral degree from the Johns Hopkins Bloomberg School of Public Health, two master’s degrees in public health and international affairs from Columbia University, and an undergraduate degree from Rochester Institute of Technology.

Julie became an epidemiologist because she was passionate about a myriad of issues related to public health. She had extensive involvement in research and program implementation in Russia and the former Soviet Union, including work supported by the NIH, The Fogarty International Center, USAID and the Global Fund to Fight AIDS, TB, and Malaria. In 1993, she co-founded AIDS Infoshare Russia, with her great friend Alena Peryskina, an organization committed to lessening the suffering caused by HIV/AIDS and informing the international community about developments around HIV/ AIDS and human rights in Russia. While at Johns Hopkins Julie was a founding member of the School’s Center for Public Health and Human Rights, and worked closely with the Director, Professor Chris Beyrer, on health and rights research and training programs in Russia and Tajikistan.

She was known as a skilled and articulate activist who brought her passion to her research career.  She served for many years on the Board of The Names Project, the steward of the iconic AIDS Memorial Quilt.

She spent her career advocating for others with a goal of improving the lives of the people around her. Prior to defending her doctorate at JHSPH, Julie was diagnosed with multiple sclerosis (MS). She attacked the disease with tenacity and passion. Her intellect and humor – and willingness to share her knowledge with others living with MS were remarkable. She became an internationally recognized MS columnist for About.com and wrote two books (The MS Manifesto and The Diabetes Manifesto).

Julie was conducting public health interventions and research overseas with her husband, Dr. Mark Stibich, also a JHSPH alumnus, when they learned of air disinfection technology being used to combat airborne tuberculosis. Recognizing that the technology, with significant adaptations, had the potential to solve a major global health issue – Healthcare Associated Infections -- they began evaluating its efficacy and potential for commercial applications. They co-founded Xenex Disinfection Systems in 2008 with the mission to destroy the pathogens that cause infections that impact the health and lives of millions of patients and their families, and become the new standard method for disinfection in healthcare facilities worldwide. At Xenex, Julie played a significant role in R&D while overseeing research design and analysis, and grant applications, frequently in conjunction with hospitals using Xenex technology. Julie’s insight and strategic thinking played a significant role in the company’s success, and her hard work continues to enhance patient safety worldwide.  

Julie’s contributions to mankind and to science were many, but those who knew her know that she considered her greatest achievements to be her twin daughters and her partnership with her husband, Dr. Mark Stibich. Family time was the most important time for Julie, and she never lacked for humorous stories about the twins’ latest proclivities. In her spare time, Julie enjoyed creating art and one of her pieces is on permanent display at the Museum of Encaustic Art (Santa Fe, New Mexico).

The week of her passing two landmark papers on updated MS treatment guidelines from the American Academy of Neurology were published in Neurology.  Julie was a co-author on both.

CB Obit Julie

The recent budget proposals from the Trump administration have generated real concern for the future of global health funding, and for one the key engines of innovation in global health, the biomedical research enterprise.  There is no question that biomedical advances are at the heart of our remarkable advances in global health.  Child survival gains are dependent on immunization programs, and they in turn, on vaccine research and development, which in turn depends on basic research in immunology and virology.  The U.S. PEPFAR program has been so successful because antiviral therapy is so effective--as both treatment and prevention for HIV infection--and the development of that effective therapy required both a great deal of basic research on the HIV virus, and some 800 clinical trials, largely funded by the U.S. National Institutes of Health, to achieve. 

The U.S. NIH is the largest, and by far the most essential supporter of biomedical research worldwide.  Continued investment in the NIH is vital to furthering health gains and to sustaining the next generation of researchers.  But how to we speak that truth to the key decision makers in this new political reality?   The Administration’s proposals to cut federal funding for the NIH by  some 18 percent for next year (the “Skinny Budget,”) and by 1.2 billion $USD in this year’s allocation, largely by reducing research grants, are only the start of engagements with the Congress and with the American people.(1)  But as policy position statements, these proposals are radical, unprecedented, and markedly inconsistent with the public and with the Congress.  The previous Congress, among the most divided in recently American history, nevertheless passed the 21 Century Cures Act in late 2016 with broad bipartisan support.  And a republican majority House and Senate were willing to send this legislation to President Obama for signature in the final weeks of his presidency.

In communicating to the new Congress, the Administration, and to the American people, it is vital to highlight some of the key arguments in favor of sustained and expanded support for the NIH and for the US biomedical research and training enterprise more broadly.  But it is also vital to underscore that this is not simply a debate about spending levels, and not just about money.  The strength of the U.S. biomedical enterprise is also about the qualities of our system.

I’ve spent my career at Johns Hopkins, one of this countries’ great research universities  We are a research university, and a teaching hospital.  Our hospitals and clinics, our Medical School, School of Public Health, and School of Nursing are all consistently ranked among the very best of American institutions.  And we are one the largest recipients of NIH research funding in health.  That is not a coincidence.  The reason we provide such outstanding care, and train such remarkable providers and researchers is inseparable from the NIH research enterprise.  That is how our system of research support and medical advances works.  NIH funds the highest priority health research through an extremely competitive peer review system, and those funds support the research that leads to improved treatments across the disease spectrum, and ultimately to better outcomes for patients and their families.  Those NIH dollars also help support the training enterprise, the essential infrastructure in research ethics, data safety and storage, maintenance of labs, and all the other elements that it takes to uphold the highest levels of safety, quality, and integrity of the biomedical research enterprise.  

That excellence, that greatness, is why our research universities are the envy of the world, why they continue to be enormous draws for talent, and why the health sciences remain one of the areas where the US continues to lead globally.

And, while some would argue that the enterprise has grown to large, in fact, times have been very tough.  We’ve lived with flat funding across virtually the entire Obama Administration, with consequent real declines in NIH purchasing power when cost of living is factored into spending.  The last real increases in NIH funding were the historic doubling of the NIH between 1998-2003.  The years of flat funding have had significant impact on younger colleagues willingness to make a career in research.  Cuts at the level the Administration has proposed would likely cost us the next generation of investigators.

So, what are the compelling arguments for maintaining and expanding U.S. leadership in biomedical research?  And here let me acknowledge the Katz and Wright NEJM perspective out last week.(2) 

There are two broad areas I’d highlight.

Return on Investment on Government supported research.

         Improved health.  NIH funded research has led to major reductions in deaths from heart disease, stroke, cancer, and HIV/AIDS, to name a new.  Rates from all diseases dropped 43% between 1969-2013.(2) 

         Increased safety and value.  Agency for Healthcare Research and Quality (AHRQ) has contributed to lowering hospital acquired conditions by 21% since 2010, 3 million fewer adverse events, 125,000 lives saved, estimated to save 28 billion USD.(2)

         Research and Drug Development.  NIH does much of the “upstream” research in R and D.  more than 150 new drugs and vaccines in past 40 years, including preventive vaccines for hepatitis B, cervical cancer, and Ebola.

         Biosecurity.  Emerging infectious diseases know no borders, as we know.  It is vital to our biosecurity to have surveillance capability where infections emerge.  And that’s why an institution like the Fogarty International Center at the NIH is such a wise investment.(3) 

Our System is Better

But it’s not just the resources, or the NIH support.  Our competitive advantage is also because our system of peer review, of transparency and fairness, our meritocracy, is so much better for science than those of our competitors.  Some consider the FDA too slow and to bureaucratic.  That charge was made when intense pressure was put on the FDA to approve Thalidomide for treatment of morning sickness, which was already in wide use in Europe.  When we think about dismantling the administrative state, these are the kinds of protections at stake.

I’ve done health research in China, Russia, and India to name a few competitors.  In 25 years of being an NIH funded investigator, no NIH official has ever even hinted at corruption of the peer review process, or that a kickback might garner a more favorable score.  Yet China has had trouble making safe infant formula, even safe pet food, because her regulatory processes are so vulnerable to manipulation, to graft, and to the influences of the powerful and politically connected. 

Russia is totally out of the modern medical/public health engagement since it's system is so corrupt and politically influenced.  Russian life expectancy continues to fall, and she has one of the most rapidly expanding HIV epidemics in the world—and a system which actually outright rejects evidence based medicine.  That is not strength, it is profound weakness. 

As some seek to reduce public sector engagement and look to private sector solutions I think it's also vital to be clear this is not and should not be an either/or.  NIH has hugely supported the private sector, and universities like Hopkins and our many peers have trained their talent pool.  Indeed, that’s where much of the University IDC goes—and again, there's a reason we're called a teaching hospital.  And why you, and so many members of Congress, want to be at our great institutions if you or a loved one are seriously ill.

Our biomedical research institutions, and the public system that supports and sustains them, are an American treasure.  The American people want advances in cancer, in Alzheimer’s, in diabetes. We want a cure for HIV and for breast cancer and for a host of other causes of suffering.  And only continued investment in biomedical research can get us there.

[ For the full recording of the public roundtable event, hosted by CSIS in Washington DC on Thursday, April 6th 2017, please click here. ]

 

REFERENCES

1.      Pear, R.  Bipartisan Concern Over Trumps Plan to Cut Funding for Biomedical Research.  New York Times, April 4th, 2017.

2.      Katz IT, Wright AA.  Scientific Drought, Golden Eggs, and Global Leadership—Why Trump’s NIH Funding Cuts Would be a Disaster. NEJM, March 29th, 2017.  D01:  10:1056/NEJMp703734.

3.      McNeil, DG.  Muffling an Early-Warning System.  New York Times, March 21, 2017.

[ Director's Notes: The following post is adapted from my opening comments at the March 10th, 2017 briefing on Mass Incarceration, Drug Policy, and HIV/AIDS, sponsored by the Congressional AIDS Caucus and hosted by the Honorable Rep. Barbara Lee. The Center for Public Health and Human Rights had led the research and development of a special Lancet issue on HIV and related infections among prisoners. In honor of National HIV in Women and Girls Awareness Day, this post focuses on the deep consequences of incarceration on HIV risk in women and girls - and in particular - minority women and girls in the United States.

In developing the special Lancet issue on HIV and related infections among prisoners, we as physicians and researchers set out to investigate the impact of incarceration on HIV, viral hepatitis, and TB.  We looked at this globally. And we asked the investigator Laurie Shrage, from Florida International University to look specifically at this interactions among African American women in the U.S.  To unpack this, we need to understand some fundamentals about mass incarceration and HIV in the US, and the disproportionate impact of both on African American individuals, families, and communities.  First in 2016 the CDC reports that AA men are some 6 times as likely to have HIV infection as white men and twice as likely as Latino men.  For AA women, the disparity is even sharper—AA women and girls are 20 times as likely to have HIV as white women and nearly 5 times as likely as Latinas.  Yet when we look at individual level risks, like numbers of partners and condom use, black women are not riskier, and in some studies have less behavioral risks for HIV than other groups.  And nearly half of all Americans who have died of AIDS since the beginning of the epidemic have been African American, despite accounting for only 12% of the US population.   What accounts for the difference?

In contrast to many other groups at risk for HIV Infection, black women have overwhelmingly heterosexual risks for HIV infection—about 87% according to CDC, so it’s not substance use.  We have to go beyond the individual and look at social and structural risks for HIV among AA women.  This is where mass incarceration of AA men plays such critical roles.  The incarceration rate, as you’ll  hear from my colleagues, is hugely racially biased—AA men have 6 times the incarceration rate as white men, and twice that of Latinos.  And because so much of this mass incarceration is attributed to harsh drug policing and sentencing policies, incarceration is also associated with HIV and viral hepatitis among these men.  Some 14% of all Americans living with HIV Infection cycle through the criminal justice system each year.  When we looked at the available data on HIV in the criminal justice system, it turns out that HIV infection while in detention is not that common, and doesn’t account for the differences in HIV acquisition among this population.  Treatment outcomes for state and federal prisons, as you’ll hear from Dr. Jody Rich, are also quite good, with better levels of HIV control—what we call viral suppression—with antiviral therapy than among the non-incarcerated population.  So those factors don’t explain the disparities.

What does differ dramatically is what happens post-release.  And that is frequent and very troubling treatment interruptions.  It’s critical to understand that when a man or woman is living with HIV infection and is successfully treated, they are virally suppressed, and are thus dramatically less likely to transmit to others.  Conversely, when treatment is interrupted, the virus comes back, often to very high levels, and the person is again infectious.   The available data on continuity of care in the US shows that the majority of people released from incarceration have some treatment interruptions, and many have long periods off therapy before they gain health care access and can get back on treatment.  Data on recidivists in Texas, for example showed that fewer than 1 in 10 were virally suppressed at a subsequent arrest.  So mass incarceration is a social reality for low income AA men, and HIV is highly concentrated among men from these same communities, and those living with HIV face frequent treatment interruptions as they return to partners, families and communities.  This is a kind of epidemiologic perfect storm.  And we think it at least partially explains why AA women and girls face such extraordinarily high rates of HIV.

To reduce HIV risk for AA women and girls we need to address the structural factors that behind this health disparity.  This will mean reducing incarceration rates for both AA men and women, which will in turn require drug policy reform, and on improving access to health care, particularly post-release.  Most prisoners are released.  They are a part of our communities, and we have to do better at insuring continuity of care for these Americans.  

Becoming the inaugural Desmond M. Tutu Professor in Public Health and Human Rights is one of the signal honors of my life.  It is one for which there are many people to acknowledge and to thank.  First and foremost of course, is the Archbishop himself, this magnificent man, but let me speak about Father, and the professorship, in a moment.

First, my deepest thanks to the principal donors of this endowment, Kathy and Ed Ludwig. Their generosity has been matched only by their deep engagement in the work of our Center and of our wonderful School of Public Health.  Kathy, as you’ve heard, chairs our advisory committee and does so with grace and wisdom.  The Tibetans have a saying about the kind of deeply decent people who quietly do good for others in this world—the good heart.  Kathy has the good heart.

The kind of work we have done in conflict settings, with LGBT communities in Africans and Asia, with ethnic minorities facing persecution, is not easy and can be politically tough.  We know that. So rare is the institution, and the leadership, willing to support this kind of work.  And that’s why Mike Klag is such an extraordinary Dean.  Mike’s also been a donor to the professorship, and for that commitment I am especially grateful.  His team, graced by Barbara Verrier, continue to be hugely helpful.  That Hopkins President Ron Daniels is also a donor, gives us confidence in the commitment of the University to this emerging field.

None of us work in isolation.  Our Center faculty, staff, and students are our critical core, and I’m so gratified that people with the talent and passion for this work, which Stef Baral exemplifies, continue to find in the Center their professional and intellectual home.  

Our partners and collaborators are the key to the work in the wider world.  No better example can be found than in Linda-Gail Bekker and her team at the Desmond Tutu HIV Research Foundation.  Linda-Gail, as many here know, will be succeeding me as the next President of the International AIDS Society, so Fathers deep engagement in the AIDS movement is secure!  It’s wonderful to have our IAS team here today, including our outstanding ED Owen Ryan, whose support to me has been invaluable.  I want to also acknowledge and thank two wonderful research colleagues who are here today, Dick Chaisson from Hopkins, and Patrick Sullivan from Emory—it’s having colleagues like these that make our work so rewarding.

And then there is my family.  My husband Mike couldn’t make this trip—he’ll be here for the AIDS Conference in July, which Father has graciously agreed to open, but I’m delighted to say my family is represented today, by my sister, Dr. Kate Beyrer.  One other family member, of our family of choice, is our beloved Michele Bohana—who first introduced me to Father.  She’s using our Center to bring ethnic Kachin community leaders from Burma together with Tibetan refugees.

And then there is the Archbishop…

What does it mean to bear his good name?  I’ve thought a great deal about this, dare we call it a burden, or a charge?  Because of the many attributes that this holy man embodies—one is certainly his uncompromising stand for justice.  He has been the most resolute of voices for those facing rights abuses—and held any and all accountable for their wrongs.  He has been unwavering, in his non-violent resistance to the evil that was Apartheid, in the great human undertaking that was the Truth and Reconciliation process, in the struggle for the rights of women in his church, for LGBT rights worldwide—for the inclusion of all in his Fathers tent.  And for that integrity we are all in debt—and I, for one, am thoroughly intimidated.

In addition to his resounding name, this professorship is in Public Health and Human Rights.  And perhaps we should think about what that might mean.  What are we are attempting when we try and bring these strands of together?  Human rights from the time of the Indian Emperor Ashoka, whose edicts are perhaps the first articulation of the rights of citizens as opposed to rulers, are aspirational.  They are universal.  Meant for all and meant to be protected for all.  While public health is a science, a population-based discipline that has been called compassion at a distance.  We’re focused not only on the precious individual life, but on the health of the community, the population.  I’d argue that at their cores, is a basis in our shared humanity.  In the dignity every individual bears by virtue of our inter-connectedness with each other.  Father has called this Ubuntu, my faith tradition, Tibetan Buddhism, calls it Compassion.  And I think in the heart of every epidemiologist, every lab scientist toiling away at malaria, or cancer, there is this same altruistic impulse.  We do the work we do because we want to make a difference, to reduce suffering, and to save precious human lives.  

When we bring human rights into the public health domain, we bring a focus on the health—the wellbeing—of the excluded, because they too are deserving of our compassion—and have the right benefit from the fruits of our science.  And when we’ve brought population based sciences to human rights, we’ve tried to add to rigor, to documentation, to the toolkit that can help make connections between civil conflict in Burma and safe motherhood, between homophobia and HIV risks in Africa, between cholera and misrule in Zimbabwe.  And we can work on interventions that may help improve both health and rights.  That’s the goal.  But it is not easy work.  And that is why inspiration and community are so vital.  

What do we hope to do with the Tutu Professorship resources?  Our center has always been committed to research, teaching and advocacy, and that will continue.  The beauty of having resources to support innovative and cutting edge research, including work in challenging environments where many donors will not go is that we’ll be able to fund work that would be otherwise impossible.  In terms of teaching—and research, we’ve already identified the first scholar and her project.  Dr Cassia Wells, a physician from South Africa who’s currently in the preventive medicine residency at JHU, will be coming to Cape Town, working with Stef and Nancy Phaswana-Mafuya on their HIV projects with gay men and sex workers in Port Elizabeth.  So we’re already well underway.

Let me end by saying that there is no greater joy than having Father and Leah here with us today.  You gave us a scare last year.  But as a lovely lady running an orphanage under Father’s patronage in Masiphumalele said me to years ago:  May he live forever!