I was recently called away from rounds for an urgent admission. I arrived to find a thin woman in her 50s, dressed in swaths of colorful fabric. She was carrying one of the little black plastic bags that people use to bring vegetables home from market. Before I could ask her anything she coughed, hard and wet. Then she spit a mouthful of bright red blood into the bag. She had a fever of 101F and had a big right side infiltrate. I didn’t need a laboratory to tell me this woman likely had TB. 

This woman is a cardiac patient in the chronic care clinic. There are several pages of notes documenting her heart condition, which is known as endomycocardial fibrosis. She’s been seen by the legendary Jerry Paccione, who politely rebutted the previous resident’s opinion of hypertension with a “not likely” scribbled in the margin. 

We talked for a while, and eventually I thought I had a pretty complete history. I started to finish up, and sent my mind back across the most likely diagnosis. Why did this woman get TB? 

“Have you ever been tested for HIV?” I asked her. 

The way her eyes went left and right, scanning for nosy ears, immediately told me the answer. I stepped forward so she could whisper, and motioned my translator to do the same. The words she muttered were barely audible. 

“She has HIV,” my translator said. 

I looked down at the five pages of “Chronic Care Management” notes I was holding. They went back as far as 2006, and she’d never mentioned the fact that she had HIV. 

“Do you have a doctor taking care of your HIV?” I asked. She said she went to the HIV clinic in this hospital for her care. 

So she wasn’t telling her heart doctor that she had HIV. And she wasn’t telling her HIV doctor that she had a heart condition. The two sets of doctors were a hundred yards away from each other, and for three years this duplicity had been maintained. 

It makes me angry. I can’t help it. You don’t want to talk about HIV? You don’t want to bring it into the open? Fine. But other societies have been down this road before. I was just a kid when the HIV epidemic started in the U.S., but even I remember that Silence = Death.

(more about my time in Uganda at whougandabelieve.blogspot.com)

Maternal Mortality—A Neglected Tragedy: Where is the M in MCH?” he shouted in an article in 1985 The Lancet 2 (8446): 83–85, with Deborah Maine startling and shaming a public health world which had since 1980 been reducing primary care to ever more selective programs targeting children and ignoring others, including those who give children birth and all who rear them, young and old. Alas, the question still stings and will until a comprehensive health approach to all humans, including mothers, comes with health acknowledged, planned and effectively funded globally as a basic human right.

According to Maternal Mortality in 2005: Estimates Developed by WHO, UNICEF, UNFPA and The World Bank (http://www.unfpa.org/upload/lib_pub_file/717_filename_mm2005.pdf), the United States has an MMR (Maternal Mortality Rate, i.e. maternal deaths for 100,000 live births) of 11 (11.5 according to the CDC, while for African-American women it is cited as 29.6, see http://www.cdc.gov/od/oc/media/pressrel/r010511.htm), putting the USA at number 41 in the world (the best is Ireland with an MMR of 1). Sierra Leone has an MMR of 2,100, while several other countries in Sub-Saharan Africa have rates above 1000 (examples: Niger 1,800; Angola 1,400; Rwanda 1,300; Burundi 1,100; Malawi 1,100). In short the numbers are atrocious, the realty of pregnancy as a risk for death around the world (even in the USA) evident to anyone who has worked with pregnant women outside the industrialized world and to many who have worked with pregnant women within the USA. The fifth Millennium Development Goal, MDG, is to decrease Maternal Mortality “by 75% by 2015 (starting in 1990).” Alas, even that would leave a terribly high number of women dying preventable deaths. Currently, the lifetime risk of a woman dying in childbirth in Africa is 1:26, with Niger having a lifetime risk of 1:7. (Ireland’s lifetime risk is 1:48,000, a demonstration of what is possible.

It was his characteristic kindness that led Dean Rosenfield to accept my invitation to write the Introduction to Women’s Global Health and Human Rights, WGHHR (http://www.jbpub.com/catalog/9780763756314/), “Global Women’s Health and Human Rights,” together with Caroline Min and Joshua Bardfield. He had always been kind to me, serving at the birth of Doctors for Global Health, DGH on the Advisory Council, and eventually becoming a major donor to DGH through a mechanism that doubled his donations. I have since learned that his kindness as author and co-author spurred many a renowned health professional to publish her or his first paper—one being the Director of the Residency Programs in Primary Care and Social Medicine at Montefiore Medical Center, Dr. Hillary Kunins, co-founder of Medical Students for Choice, MSFC (http://medicalstudentsforchoice.org/), with “Abortion: A Legal and Public Health Perspective” (Annual Review of Public Health, 1991; 12: 361-82).

In a recent lecture (1 June 2009) for the Global Health Course of Montefiore Medical Center and Albert Einstein College of Medicine, Dr. Joia Mukherjee, Medical Director of Partners in Health (www.pih.org) and an author in WGHHR, made the point that any woman who has had a C-section, received antibiotics or gotten blood during delivery or post-partum would likely have died in most parts of the world and consequently should, along with her partner and anyone else who loves her, be fighting for and demanding access to adequate birth-care for women worldwide as a matter of personal to global solidarity

I am certain that Dean Rosenfield would have affirmed that logic of sharing good fortune. His actions, literally to his dying day, embodied and encouraged such solidarity. In addition to his work promoting women’s health, he dedicated much of his professional life to fighting the AIDS epidemic. His vision extended to health equity for all, health in its largest sense of wellbeing including education—especially for women. “People should have access to the same care in a poor country as in a rich country,” he stated in an interview with Charlie Rose in 2006 (http://www.charlierose.com/view/interview/325), also saying: “I think it’s obscene that in our country 15-18% of people are uninsured.”

Dean Rosenfield enhanced Women’s Global Health and Human Rights, the book and the concept, by direct action throughout his professional life. Alas, the health and human rights reality worldwide for women—and thus for all persons–remains abysmal. In terms of global Maternal Mortality we have Ireland’s example as a target–why not? Equity, not just diminished misery, should be our goal—for women, for every human, anywhere in the world. That goal is Dean Rosenfield’s legacy. Making that goal happen is his challenge for all of us, now.

Dr. Anastos is an Internist who  graduated from the Residency Program in Social Medicine in 1983.  She is currently a Professor at Albert Einstein College of Medicine in the Department of Medicine as well the Department of Epidemiology and Population Health.  She is known for her pioneering work in the study of HIV in women as principal investigator of the  Women’s Interagency HIV Study (WIHS).  Jonathan Wallen is a New York photographer who specializes in architectural and landmark photography.  Since 2003 they have become increasingly involved in work in Africa, some of which they shared last Tuesday.

Mr. Wallen filled the walls of the third floor conference room with pictures from the Tubeho (“To live again”) Project.  Tubeho documents the stories of female victims of the Rwandan genocide and consists of a series of photographs with accompanying stories (see an example at this link).  These were disturbing stories.  The pictures that accompanied them showed both women in the full bloom of life as well as others whose spirits and bodies seemed broken.  Showings of the exhibition have been used to raise funds for the genocide victims as well as to bring attention to the links between gender-based violence and the spread of HIV.

Dr. Anastos framed her work in the context of  Community Oriented Primary Care (COPC).  She shared her initial skepticism, developed from her work in the Bronx, in COPC as a model of care.  Rwanda, however, had changed her point of view.

The couple’s involvement in Rwanda began in 2003.  Dr. Anastos had been contacted by Les Veuves (the Widows) a group of genocide survivors, many of whom were infected with HIV.  They were incensed that they did not have access to treatment while their victimizers – on trial for genocide – were receiving HIV medicines.  Dr. Anastos had worked as an administrator at the Montefiore Medical Group and felt she knew about  building an efficient, comprehensive, high quality primary care practice for a chronic disease.  As she put it, her credibility was as an HIV expert, but her skill was as a manager.   With assistance from the Stephen Lewis Foundation she helped found We-ACTx (Women’s Equity in Access to Care and Treatment) in mid-2004. The goal was to create an HIV treatment program, but this implied first setting up HIV counselling and testing.

One of the lessons of this experience was to ” first, provide the services people ask for, not just those professionals think they need”. This, she felt, was the essence of COPC.  And what people wanted was wanted medical care (to prevent dying and promote health), HIV testing, medical care for their children, food, income, and – a top priority -  education for their children. The local women rejected the idea of going out “into the bush” to provide care.  They wanted it done through existing infrastructure and using local nurses and clinics.  By knitting together multiple small grants an HIV testing program was implemented in September of 2005 and has by now performed over 50,000 tests.  In January of 2006 anti-retroviral care was introduced and there are currently 2,400 people on ART, essentially “everyone who needs it, gets it”.  The program is implemented in coordination with 24 community partners and is staffed by 2 physicians, and 12 nurses.  She feels that the necessary skills to run the program exist locally (“if we left now, the program would continue”) but that the local staff continues to need salary support.

For a beautiful look at the WE-ACTx progam in action, you can see pictures in the linked slideshow.

Because of the focus on meeting people’s expressed needs, several “off mission” programs had been created.  “Just because I think it is not health service related, doesn’t mean we don’t have to find a way to provide it.”  These off mission programs included the provision of food supplements, creation of income generating activities (originally doll making, now bag making, see Ineza), community based education, and a program to help with school fees.More recent activities are a cohort study (requested by the community) and programs to address cervical cancer.  Cervical cancer, an essentially preventable disease is the number one cancer killer in Rwanda.

In considering the successes of their work (and of the COPC model) Dr. Anastos pointed to the strong sense of community in Rwanda.  “There is no cult of the individual. It is always my family, my community, my country.”

posted by Matt Anderson, MD

The movement for Family Centered Maternity Care is several decades old.  Interested readers may want to consult Celeste R. Phillips‘ book  Family-Centered Maternity Care some of which can be read on Google Books. Phillips, a pioneer in the field, defines FCMC as “a way of providing care for women and their families that integrates pregnancy, childbirth, postpartum, and infant care into the continuum of the family life cycle as normal, healthy life events.”  She developed the following 10 principles for FCMC:

Principle No.1: Childbirth is seen as wellness, not illness. Care is directed to maintaining labor, birth, postpartum, and newborn care as a normal life event involving dynamic emotional, social and physical change.

Principle No. 2: Prenatal care is personalized according to the individual psychosocial, educational, physical, spiritual and cultural needs of each woman and her family.

Principle No. 3: A comprehensive program of perinatal education prepares families for active participation throughoutthe evolving process of preconception, pregnancy, childbirth and parenting.

Principle No. 4: The hospital team helps the family make informed choices for their care during pregnancy, labor, birth, postpartum and newborn care, and strives to provide them with the experience they desire.

Principle No. 5: The father and/or other supportive persons of the mother’s choice are actively involved in the educational process, labor, birth, postpartum and newborn care.

Principle No. 6: Whenever the mother wishes, family and friends are encouraged to be present during the entire hospital stay including labor and birth.

Principle No. 7: Each woman’s labor and birth care are provided in the same location unless a Cesarean birth is necessary. When possible, postpartum and newborn care are also given in the same location and by the same caregivers.

Principle No. 8: Mothers are encouraged to keep their babies in their rooms at all times. Nursing care focuses on teaching and role modeling while providing safe, quality care for the mother and baby together.

Principle No. 9: When Mother-Baby care is implemented, the same person cares for the mother and baby couplet as a single-family unit, integrating the whole family into the care.

Principle No. 10: Parents have access to their high-risk newborns at all times and are included in the care of their infants to the extent possible given the newborn’s condition.

Dr. Phillips currently runs a healthcare consulting company, Phillips + Fenwick, which assists hospitals in implemented FCMC programs.  The company website – www.panf.com – has some resources on FCMC, such as a short reading list.  Of particular interest, is her 1999 article Family-Centered Maternity Care: Past, Present, Future which discusses the history and current of FCMC. Readers may also wish to consult the WHO’s document on Care in normal birth, although this document is now 12 years old.

posted by: Matt Anderson, MD

Girls are not for sale

On Tuesday, December 9th, 2008 Ms. Lori Cohen, a lawyer from Sanctuary for Families spoke at Social Medicine Rounds on “Understanding Human Trafficking.”

Sanctuary for Families is the largest New York State non-profit “dedicated exclusively to serving domestic violence victims and their children.”  However, over the past 20 years Sanctuary’s work in domestic violence has led the organization to become  increasingly involved in issues of trafficking.  DV victims are not uncommonly also victims of trafficking.

And, as Ms. Cohen pointed out, they often first come to the notice of health professionals who see them for the sequelae of their abuse.  Clinicians, therefore, can play an important role in identifying and referring victims.  A website (http://www.humantraffickinged.com/) has been set up to alert Emergency physicians to the problems of trafficking.  This very simple, but quite useful site, is a joint effort by the (NY) Mount Sinai Department of Emergency Medicine, the American Osler Society, AMSA and Brown Medical School.

Much Ms. Cohen’s talk was devoted to sex trafficking, and particularly sex trafficking among minors.  About 450,000 children run away from home each year.  One out of three are estimated to be lured into prostitution within 48 hours.  This may explain why the average age at which prostitution begins is 13.  Ms. Cohen showed the beginning of a film (which is currently being aired on Showtime) entitled “Very Young Girls” about tween and teenage prostitutes.  This was not a very easy film to watch.   However – in a section of the movie we did not see – it traced how Rachel Lloyd, “a survivor of commercial sexual exploitation and trafficking” established GEMS – Girls Education & Mentoring Services – to help young women who are victims of trafficking and to end commercial sexual exploitation of children.  The bracelet pictured in this post is sold by GEMS to raise money.

Whereas most human trafficking is within the United States (state to state and within states) New York City has a large population of immigrant victims of trafficking.  Trafficking into the United States comes from Southeast Asia (China, Thailand, Vietnam), followed by Eastern  Europe (Russia, Ukraine, Czech Republic), and finally Latin America.  As Ms. Cohen noted, whenever there is an important military conflict affecting civilian populations, trafficking from that area increases.   She discussed clients of hers from Russia, Venezuela, the Ukraine, Korea and Sri Lanka, as well as locally trafficked victims of abuse.  Sometimes women are brought in by organized crime rings, other times by “Mom and Pop” or family operations, such as the infamous Carreto family in New York.

Ms. Cohen emphasized that recognizing that a woman was a victim of trafficking is often difficult.  Women are distrustful of government agencies. They often times do not have identification papers and believe that they have committed crimes.  Their stories are programmed by the trafficker.  Denial or minimization is common, as is shame.  Language poses a barrier with abusers often serving as “interpreters.”  The Human Trafficking ED site offers recommendations for providers seeing patients who they suspect are victims of trafficking.

The take home message is that clinicians should be aware of this problem, maintain an index of suspicion for abuse and trafficking, know how to sensitively interview a patient and have access to referral sources, such as Sanctuary for Families.

Posted by Matt Anderson, MD

According to a recent New York Times article, “Women Buying Health Policies Pay a Penalty,” women are paying up to 50% more than men for private health insurance on the individual market. This discrepancy, which the industry attributes to the cost of maternal care and higher consumption of medical services by women, demonstrates yet another negative impact of for-profit insurance companies on the US health care system.   Some, including John McCain, may disagree about whether health care is a human right, but necessary medical care, especially in the case of emergencies or in prevention of chronic disease, cannot be considered a commodity, if we truly value the public’s health.

For individuals or employers seeking to purchase health insurance plans, the forces of the free market have not shaped a rational or efficient system in the United States. Even health plans that do not cover maternal care end up costing women more than men of similar age and health status, making it clear that the driving force for higher costs is utilization. Young women, for whom the cost discrepancy is greatest, may consume more health care services than young men, but this necessary care, such as family planning services or pap smear testing for cervical cancer, would be encouraged by a well functioning health care system.   Preventive medicine improves health and avoids more expensive interventions – like treatment of cervical cancer or maternal care for an unwanted pregnancy – later in life. However, most individuals change health plans multiple times in their adult life (20% per year in the employer based market), making the upfront costs of prevention, which may ultimately benefit a competitor, an unfavorable investment for a for-profit insurance company.

Beyond costs, when health care becomes a commodity, public health loses. Financial barriers to recommended care, such as high premiums for young women likely to access preventive care (or cost sharing for mammography or pharmaceutical benefits), achieve the goal of reducing health care utilization, and therefore costs for the insurance company, but this can be harmful for the health of a population. Financial barriers compel individuals to go without both necessary and unnecessary care, and have been shown to have deleterious effects especially among the poor and elderly. We need a health care system that controls cost by encouraging prevention, promoting evidence based medicine, and eliminating private insurers’ profits from the balance sheet. But we cannot skimp on care.  We need a system that truly values each individual’s right to high quality health care and right to their highest attainable status of health and wellness. Left up to the markets, we get a system that penalizes women for accessing necessary care, which is both unjust and unwise.

posted by Aaron Fox

]]> http://www.socialmedicine.org/2008/11/08/us-health-care/should-women-pay-more-for-health-insurance/feed/ 5 http://www.socialmedicine.org/2008/10/29/hivaids/thing-with-no-name-hivaids-in-south-africa/ http://www.socialmedicine.org/2008/10/29/hivaids/thing-with-no-name-hivaids-in-south-africa/#comments Thu, 30 Oct 2008 03:38:38 +0000 bronxdoc http://www.socialmedicine.org/?p=482 Sarah Friedland, a filmmaker and friend who has collaborated with us in producing documentaries about health activists, is currently on tour with Thing with no Name, a film she directed about HIV in South Africa. Its next showing will be at the Starz Denver Film Festival from November 13 to 19,2008.

The film, shot in the summer of 2006, traces two Zulu women with AIDS as they begin treatment with anti-retroviral medications.  The following You Tube clip gives a sense of the issues raised by the movie as well as its visual beauty and quiet flow.

Here is their description of the film:

Thing With No Name, a feature-length documentary, is an intimate portrait that follows two women with full-blown AIDS in rural South Africa as they try to access treatment through the public sector. The film takes the viewer to Okhahlamba, a traditional Zulu area nestled in the shadow of the Drakensburg Mountains, a stunning UNESCO World Heritage Site. Filmmakers Sarah Friedland and Esy Casey were introduced to this community by one of its members, their friend and Ground Producer Phumzile Ndlovu.

Through this connection, the filmmakers were able to integrate into the families with ease, participating in the daily activities of people living with the illness, and sharing in their moments of pain, joy, and humor.

This film is a portrait of two families, and more specifically, two individuals: Danisile Mvula and Ntombeleni Mlangeni. The film opens with both women describing their history and understanding of HIV/AIDS. From there, it takes the viewer through both womens’ experiences as they initiate treatment. Danisile responds well to the medications that she is now committed to for the rest of her life; she creates nicknames to help her remember the different pills, and goes over the protocol with her family and her homebased caregiver, a volunteer nurse. Ntombeleni does not respond as positively, losing all strength. Unable to walk, she is carried home from the hospital on her sister-in-law’s back. She becomes delirious, refusing to take the medicine, but gradually adjusts to it, and there is a brief moment of calm as both women begin their new reality. At this stage, other aspects of Ntombeleni and Danisile’s lives are explored: Danisile’s strained relationship with her teenage daughter, and the traditional Zulu ceremonies that Ntombeleni’s family
holds to combat her illness in their own way.

The filmmakers have also produced a production blog recounting the story of the movie’s creation and current distribution.  For an interview with Sarah Friedland, see Indiewire.

posted by Matt Anderson, MD

Cara Muhlhahn, Certified Nurse Midwife (left) with Mayra and David Radzinski. Photo Credit: Paulo Netto

Social Medicine Rounds on 9/23/08 was devoted to a showing of the film The Business of Being Born, produced by Ricki Lane and directed by Abby Epstein.

The film, which traces several pregnancies and births, offers an extended contrast between the highly medicalized world of US obstetrics and the world of homebirths and midwifery.  It argues that American medicine has so lost touch with the basic needs of women in labor that most obstetricians have never seen a home birth and only rarely witness a ‘normal’ birth.

In 1900, 95% of birth in the US occurred in homes.  Fifty-five years later less than 1% did.  During this time, physicians asserted control over pregnancy and birth, progressively marginalizing midwifery.  With the introduction of fetal monitors in 1970, Cesarean Section rates in the US climbed from 4% of births to 23% in the space of a decade.  This dramatic change in medical practice occurred without evidence to support the benefit of fetal monitoring.  The film argues that hospitals and physicians, anxious to keep the assembly line of the obstetrics floor moving smoothly, simply don’t have time for normal labor.  Women are started on epidurals for pain, their labors slow, they are given pitocin to augment contractions, they get more pain, more pain medicine, more pitocin, and so on in a cycle of ever increasing medical intervention.  “Her labor is taking longer than it should,” is the comment of the obstetrician.  Finally when the monitor shows fetal distress, the doctor intervenes “for the sake of the baby.” The woman ends up with a Cesarean, the safest solution, we are told, for the doctor concerned about malpractice.

Woven into this story is the counter tale of how home birth was revived by the hippies during the 1960′s. Ina Mae Gaskin, the “mother of authentic midwifery” is interviewed and we see scenes of her working at the Farm Birthing Center.  She proudly recounts that they did not do their first Cesarean until after over 180 births.  The film also follows a contemporary certified nurse midwife (seen in the photo above) as she rounds in New York City. We witness several home births – including that of Ricki Lane.  These are clearly the most striking moments of the movie. The women labor in a variety of positions – squatting down, lying in a tub, squatting in a tub, lying propped on a couch.  In an amusing moment a Brazilian doctor describes how the lithotomy position (lying flat on your back with your feet up) is the worst possible one for a woman delivering a baby.  Finally, after the intense pain of labor, there is a moment of silent release and the baby is born. “Reach down and take your baby,” the midwife says to the new mother.  As a physician who has experienced only hospital births these scenes were revelatory.

Running throughout the film is a concern over the safety of homebirth and the competence of midwives.  And not all of the home births shown are successful.  But if one can question homebirths and midwifery, is it not also legitimate to question hospital births and the competence of physicians?  Clearly, 1/3 of all births don’t have to be done by Cesarean Section.  The question really is how to design a health care system that can find the right place for each type of practice. But academic medicine seems largely unable to even pose that question.

Our thanks to the filmmakers for posing it so movingly. And for allowing us to share in the births of their children.

The film’s website has links to a variety of resources on midwifery and a short trailer.

Posted by Matt Anderson, MD

OSI has provided funding to health activists in the past through its Fellowship Programs.

One of these programs, Medicine as a Profession, began at OSI and subsequently moved to the Institute on Medicine as a Profession at Columbia University. Medicine as a Profession provided physicians with the opportunity to get fellowship training in advocacy and operated from 1999 to 2007. A list of the 44 funded fellows is on the Columbia website.

OSI also funds particular Initiatives in Health. When we checked their website (in June of 2008) this was the list of current initiatives.

• Closing the Addiction Treatment Gap
• Global Drug Policy
• International Policy Fellowships
• Open Society Mental Health Initiative
• OSI-Baltimore
• Public Health Program

In addition to these initiatives there are standing health-related programs:

Reproductive Health

Project on Death in America

The DFSM currently offers a 2 year Fellowship in Family Planning and Reproductive Health. Fellows receive training in clinical research, both qualitative and quantitative, develop clinical and teaching skills, have opportunities to work internationally, and connect to a rapidly expanding network of family planning experts.