FRED DE SAM LAZARO, correspondent: Early each morning in the chapel of St. Damien’s Children’s Hospital, the shrouded bodies of infants—and one adult on this day—are counted, the names written down for prayers that follow at daily Mass.

REV. RICHARD FRECHETTE: Anybody that dies in our arms, as they say in Creole, in our place, then their body is first brought to the chapel so that the very next Mass we have the prayers for the dead and for their peace and for the transformation of their life to eternity and for the strength and courage of their family.

DE SAM LAZARO: Father Rick Frechette spends much of his day attacking the infant mortality he sees so literally each morning. He’s the founder of one of the largest medical care facilities for children and many adults in Haiti. It’s grown by necessity, often out of tragedy. Frechette is a member of the Community of Passionists, a global Catholic order, and he began 25 years ago with what seemed a more straightforward mission: a shelter and school for orphans. Today, 800 children are housed at several centers. This one, taking in the overflow, functions out of converted shipping containers. The shelter’s young managers themselves grew up here. Billy Jean is one. He was brought at age three to NPH, the orphanage’s local acronym. Today, he works to master English and is in law school.

BILLY JEAN: My mother became pregnant very early, about 16 years old, and my father took off, and then my mother couldn’t take care of me. She heard about NPH and she decided to put me there…

DE SAM LAZARO: His mother visits occasionally, he says, but the orphanage is very much his family.

REV. FRECHETTE: That’s our goal, to restore the family over one generation, to raise the children together so they have memories of their own childhood, restored childhood, and that later in life they become aunts and uncles to each other’s children and their family regenerates after a generation. That’s our goal, so we have community of families that have been broken by tragedy.

DE SAM LAZARO: The tragedy of Haiti’s AIDS epidemic, beginning in the nineties, brought big change for the organization and Frechette himself. HIV was bringing in very ill children that the orphanages were ill-equipped to care for.

REV. FRECHETTE: That really engraved itself hard on my memory. Seeing such terrible things and honestly not having a clue, not having a clue as to what to do.

DE SAM LAZARO: Frechette received permission from his order to go to medical school, a multiyear commitment which he completed in his mid 40s. Back in Haiti, his newly-acquired expertise, combined with astute fundraising, resulted in a modern pediatric hospital. It expanded with a new building in 2006, the largest of its kind in the country, with a 22-bed center for neonatology.

DR. JACQUELINE GAUTIER (Medical Director): Neonatology is a luxury for Haiti.

DE SAM LAZARO: Dr. Jacqueline Gautier is the medical director.

DR. GAUTIER: We have central oxygen. We can offer CPAP, which is external ventilation.

DE SAM LAZARO: (to Dr. Gautier) So on any given day, you have 22 kids in here who would not have lived were it not for this facility?

DR. GAUTIER: Correct. All the 22s are not very intensive. Half of it. Half of them.

DE SAM LAZARO: Many of these premature births result from conditions like hypertension or diabetes in the mothers. For them, a maternity unit was added in 2010 after the capital’s major hospital for high risk pregnancies was destroyed.

DR. GAUTIER: Fortunately, 2010 we were not really damaged by the earthquake. It was a few cracks. A few cracks only.

DE SAM LAZARO: The quake did not damage this hospital, but it quickly overwhelmed it.

DR. GAUTIER: The yard was transformed into a trauma center. We had patients everywhere.

DE SAM LAZARO: In a few weeks, Frechette says the decision was made to use donations that were pouring in to start a new adult hospital. Ten months later, a cholera ward had to be added after the deadly outbreak that killed nearly 5,000 people in its first year.

REV. FRECHETTE: So we kind of mushroomed out in response to all of these problems. I think the surprise to everybody, including to us, is that we could do it all pretty much without batting an eyelash. And the real wonder of it, to tell you the truth, this is a country of no infrastructures practically, and it’s a country of failed NGOs.

DE SAM LAZARO: He says three years after the quake, despite billions of dollars given to thousands of NGOs—non-government organizations—the rebuilding has been painfully slow.

REV. FRECHETTE: There’s too much disjointedness. It’s goodwill, and it should be recognized fully as that and appreciated, but it doesn’t get channeled in a way that makes sense, and in fact it’s a way that gets disruptive.

DE SAM LAZARO: Many smaller NGOs, often church-based, have come and gone as their funding allowed. Bureaucracy has slowed larger agencies as they’ve planned major projects in housing, clean water and sanitation. Some 360,000 earthquake victims remain displaced in tent camps. For it’s part, Frechette’s organization took in $9 million in earthquake-related donations. Its approach now is focused on community.

RAPHAEL LOUIGENE (Project Manager): (translation) Organizations come in with their own ideas and do things their own way. The way that Fr. Rick works is we don’t come into a community and give our idea of what to do and how to do it. We listen to the community, listen to their needs because they know them the best, and then we work together to accomplish it.

DE SAM LAZARO: In the sprawling Port au Prince slum called Cite Soleil, the group is partnering with the community to build homes to replace the sea of shacks and squalor. They’re simple two room structures built on the principle that if you wait to do things right, nothing will get done for years, prolonging the suffering.

REV. FRECHETTE: The way that we look at it and explain it to our donors, we’re investing in the purchase of time. You know, they’re simple block structures, we make most of the blocks ourselves. They’re simple aluminum roofs. It’s more towards normal than anything that they have known, but we’re just buying time while the people with big money and big plans, an interwoven network of organizations can do a proper urban development. That’s what we’re doing.

DE SAM LAZARO: They’re also doing health care here. A new facility is being built in Cite Soleil. All told, about 1,800 Haitians work for the mission begun by Frechette. Hundred of thousands have been served in orphanages, schools and hospitals. Funding comes from private individuals, foundations, and government grants. This year, Frechette was awarded the one million dollar Opus Prize, given to a faith-based social entrepreneur by the Minnesota-based Opus Foundation.

Frechette himself does not see his work in charitable or heroic terms.

REV. FRECHETTE: Rather than saying, I gave you this chance, I say, I was fortunate. I had that chance. It came to me. I didn’t make it. And we want that same chance to come to you so that we have the same chance. We’re people who care by being the bridge between resources that have benefited us in our life for our education and well-being, and we just want to be the bridge for letting that happen by people who have their own capacity and dreams.

DE SAM LAZARO: A long road, he admits, where success is built one small stretch at a time.

For Religion & Ethics NewsWeekly, this is Fred de Sam Lazaro in Cite Soleil, Haiti.

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DR. JAMES OLESKE (University of Medicine and Dentistry of New Jersey): I don’t have a big lap like Santa. Do you like that rabbit? That’s yours. It’s a purple rabbit. That’s purple. Alright, I was told that three times he was in the ICU?

In the US we’ve been mostly concentrating on curing every child. We’re not going to let a child die. Now that’s a great challenge to motivate by, but the ones we can’t cure we just wash our hands and move on, and they’re left to their, by themselves.

Balloons! I guess this is part of our play therapy.

I went into pediatrics because I loved children, and I thought I would help children, and I wasn’t prepared to go to funerals, so many at least, in the beginning of my career. My teeth were cut on all the AIDS kids I took care of, and kids would come in, you know, with all their baby teeth were blackened down to the gum line. They’d have abscesses, and their thrush was so bad it would make it impossible for them to swallow or eat. So then you have an infant….In the beginning of the epidemic, when people were initially afraid, people who had AIDS and who were dying—they were left alone. Everyone shuns you, even your doctor. In that era I would reach my hand through the bars, because kids are always in these cages, and just hold their hand or leg and just, I guess, in my own way pray and hope and wish and lay hands on.

One of the reasons I’ve gotten into the Circle of Life and palliative and pain management is that I saw what a bad job I did in AIDS—very painful disease, and I wasn’t aggressive in the beginning. I am now, but I learned. One of the patients I learned from was Quinetta. She had a tumor throughout her GI tract, and the only way she could relieve her pain, because I wasn’t giving her enough morphine, was to sit in bed scooched over and rocking, and somehow that helped her pain, I guess. When she died, I went in to talk to her grandmother, who I was very close with. I went into the room to tell her, and the next thing I know I’m in her arms crying, and she’s comforting me.

I just wanted to point out to the medical students that pain management and what I like to call palliative care in chronic diseases is not just taking care of children who are dying and end of life care like hospice. This is a much more long-term approach to how we improve the lives of children, and pain management has not been a great success by pediatricians in the past. I mean, we’ve been afraid to use drugs that really control pain and have undertreated pain for such a long period of time.

Less than 1 percent of patients with chronic illnesses ever get addicted and use drugs for drugs’ sake use. Ninety-nine percent of them never happen. So what we do is we don’t treat the 99 percent because we’re worried about this 1 percent, and it’s crazy. So for children it’s even more of an argument you have to make because people, “you’re going to make them addicts.” We’re not going to make them addicts.

Medical Student: She’s a 12-month-old female who has a history of MRSA positive abscess, who was readmitted on Sunday and started on a five-day course of antibiotics. She’s been doing well. She’s been afebrile the entire time.

Dr. Oleske: And we can take that nasty old IV out.

Medical Student: Yes, since she’s done with her antibiotics it can come out.

Dr. Oleske: Great. I’m going to give you this rabbit so you have two of them.

What the Circle of Life is all about is any child with a chronic illness that’s causing pain to be as aggressive with the pain management as you are with treating whatever the disease the child has so that when they do live longer it’s quality of life, and when the children are ready to go on Circle of Life is also committed to helping families deal with that dying process.

And we’re struggling. We have two non-paid physicians, we have two paid nurses, a half-time bereavement counselor, and yet we’ve been able to service so many families in New Jersey and make a difference.

Mr. Schorbel: Dr. Oleske, how are you? It’s good to see you. We’re glad you’re here.

Dr. Oleske: You know she is my favorite patient.

Mrs. Schorbel: I know.

Dr. Oleske: I’m not supposed to say that.

I already had a group of patients that I think needed and would benefit from palliative care. One of them was my favorite patient of all times, Leann Schorbel.

Dr. Oleske: Is that light too much?

Leann was a special person. She sort of arrested, if you will, her mental and physical growth because of an endocrine problem she had, added to the GI problem she had…

Dr. Oleske: Two times in one week, huh?

…added to the immunology problem she had, added to the anatomical, ventricular, brain and blood supply system that she had. I almost wonder how she survived.

Dr. Oleske: If you were closer I’d come and draw your blood like I used to.

And I sort of grew up with Leann over the 25 years I’ve known her, trying to treat her immune deficiency.

Dr. Oleske: Well, you know that the specialist at the hospital should be able to draw blood. I’m not the only person that can do that.

Leann Schorbel: Yes, you are!

Mrs. Schorbel: Circle of Life will keep her at home. That’s what we need, and that’s the people that we want to be here. It keeps her surrounded by the things that she loves and still not feeling well it keeps us as a family together. We’re not separated because when you’re in the hospital you’re totally separated.

Mrs. Schorbel to Leann: There was one person that you like that was on it, and who was that?

Leann Schorbel: Justin Bieber.

Mrs. Schorbel: She knows that mommy and daddy are with her and that the people that will come in to help her are loving people that are very gentle and kind and they are going to respect what makes her feel good and they are not going to scare her.

Dr. Oleske to mother on ward: This baby looks really beautiful…

If you look at the history of Islam and the Prophet Muhammad, he made statements like doing good, kind act to others is important, but relieving the suffering of others the reward is God. And if you look at the Christian ethics, you have Christ saying, “Suffer the little children unto me.” It reminded me of the AIDS kids, you know. Christ, if he was here, he would have embraced the AIDS kids. He wouldn’t have said, ugh, I don’t want to get this disease. He wouldn’t have put on a gown and mask and gloves. He would have embraced them.

Dr. Oleske to nurse: So you want to tell me a little bit about the baby…

Nurse: This baby is 20 days old.

Our role as physicians, as healers, is to relieve pain and suffering and to also meet the spiritual needs of the families and children. That doesn’t mean that you take on the role of their religious advisors but that, first of all, you respect what their religious and spiritual beliefs are, and I think it’s important for physicians to have some type of spiritual bedrock if they’re going to do this.

Nurse: We can dim the lights according to the time of the day.

When I was first in AIDS people would interview me and say you’re a pioneer, and I never knew what that meant. Did I carry a fork and I had overalls on? But maybe, in a way, Circle of Life is a little pioneering, but I’m hoping that instead of just being a pioneer we end up being the standard of care…

Dr. Oleske to patient: You have my bunny! I have the same one. We match!

…that what Circle of Life does is done for every child in New Jersey…

Dr. Oleske: This is a very beautiful young girl, mommy…

…every child in the United States, and internationally.

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ROBIN NANAGWANDU (through translator): I will continue working until I die. I don’t have enough food stocks, just enough money to buy day to day. It’s not easy to care for a kid who is HIV positive; not easy to shuttle him back and forth to hospital.

DE SAM LAZARO: Until recently, there were just two pediatricians to care for the entire public health system. Dr. Peter Kazembe was one.

(to Dr. Kazembe): How many children in this country, approximately, are HIV positive?

Dr. PETER KAZEMBE: Well, it’s estimated at 83,000 children now.

DE SAM LAZARO: Eighty-three thousand children, and to serve all of them you have two pediatricians?

Dr. KAZEMBE: Two pediatricians, yes.

Getting a checkup

DE SAM LAZARO: Malawi has just one medical school, and Kazembe says most of its graduates leave for more prosperous countries, like neighboring Botswana, Britain, or the United States.

Dr. KAZEMBE: The issues are the same in all the countries in southern Africa, certainly. You know, salaries — poor salaries, poor working conditions. There’s nothing more frustrating than knowing what you need to do but not having the resources to do it.

DE SAM LAZARO: Dr. Kazembe is in charge of one effort to bring health care resources to Malawi. Its center is a modern, American-style clinic, complete with 11 American doctors. They are typically in their first job after residency and will spend at least one year rotating through this busy clinic and also in some Malawian public health facilities. The Pediatric AIDS Corps program is the brainchild of a physician at Baylor College of Medicine in Houston.

Dr. Peter Kazembe

Dr. MARK KLINE (Baylor College of Medicine): You know, obviously a number of long-term solutions have to be put in place to encourage African doctors to remain in Africa and to bring back African doctors who have immigrated to the developed world. But while those fixes are being put in place, we can’t afford to lose a generation of children to this epidemic.

DE SAM LAZARO: With a grant from the drug giant Bristol Myers Squibb, Kline designed a program that pays the doctors a stipend of $40,000 a year. It’s a fraction of what they could earn at home, but the program also pays down up to $40,000 in student loan debt for each year of service.

Dr. KLINE: Half of the doctors that we have in the program could not have participated were it not for the student loan debt repayment provision, because they simply couldn’t afford to do so.

DE SAM LAZARO: Three years after it began, about 60 physicians have been placed in 11 African countries. Their mission is to treat patients, but more importantly to train local providers on the front lines, like nurses and clinical officers. In addition to training, Baylor’s own clinic offers model conditions not found in Malawi’s crowded public health care system, such as working equipment, hygienic facilities, and drugs. That was enough to bring Dr. Portia Kamthunzi home from the U.K, despite a big pay cut.

Dr. Omalara Thomas

Dr. PORTIA KAMTHUNZI: It’s not just the money for me, it is the job satisfaction as well. Working with HIV positive children I feel like I can relate to them better than other people that are coming from other countries, because in a way I know the culture. I know the type of background they are coming from.

DE SAM LAZARO: It may be a modern clinic for Malawi, and it does offer the once prohibitive anti-retroviral or ARV drugs for AIDS. But for the visitors this is a culture of severe limits compared to the “do-whatever-it-takes” American system they trained in.

Dr. CHRIS BUCK: I have one patient I can think of in particular that’s a 17-year-old boy. He’s pretty severely immune suppressed. He’s been on ARVs for a long time, and he has a gastric tumor, and it’s just kind of slowly killing him, unfortunately, and I can think of so many things that I could do for him in the States to improve his prognosis, from diagnostic tests to different medicines, and here I’m really hampered and limited. I really find that to be distressing.

Dr. OMALARA THOMAS: I think every day you wonder and you say to yourself when you’re prescribing these medicines, but what difference really is this going to make? You know, really what they need is food.

Dr. SAEED AHMED: I worked at a very high-acuity-care hospital in New York at Columbia, and if one patient died or two patients died in a week or a month, it would be a big deal. Then we come here and during our time on the wards we might have three or four patients die a day. And coming to terms with that and coming to terms with there being limits to what we can do for kids was shocking and hard.

Dr. Fitzhugh Mullan

DE SAM LAZARO: One prominent advocate says programs like Baylor’s are a payback to poor countries who have long helped fill the doctor and nurse shortages in rich nations.

Dr. FITZHUGH MULLAN (Project Hope): The Baylor AIDS Corps is a spectacular example of nongovernmental commitment to a contribution to certain poor countries in a specific area — pediatric AIDS — that really is part and ought to be part of a larger contribution that we as a country make back to countries that have been generous to us in spite of the economic inequalities between us.

DE SAM LAZARO: Dr. Mullan has long advocated a much larger federal program like Baylor’s. It’s right, not just morally he says, but strategically.

Dr. MULLAN: There are battles for hearts and minds going on in Africa. China is very present. And sending doctors abroad, sending nurses abroad, is partly a statement of what we are beyond Coca-Cola and other commercial enterprises.

DE SAM LAZARO: There’s no shortage of doctors who want to go. For every one chosen, Baylor has to turn away two.

Dr. KLINE: I think most of them do it because they feel that AIDS in Africa is the challenge of this generation. This is a very highly idealistic group of young physicians, by and large, and they want to do something very meaningful. Straight out of their training they want to have an immediate impact.

Dr. Amy Sims

DE SAM LAZARO: The doctors say their Africa stint has been profoundly formative, and likely not their last. New Yorker Omalara Thomas is bringing it full circle in her family. Her parents are Nigerian immigrants to America.

Dr. THOMAS: I’ve been involved with trying to develop, hopefully, a program with Nigerian, I guess you can say, expatriates to the U.S. and physicians there who at some point do want to come back to Nigeria and do want to work.

Dr. AMY SIMS: I’m actually going back for specialist training in a couple months in the States, and specialists are something that are kind of few and far between here in Africa, and so I plan to use that to train African health workers and kind of pass on that knowledge, and so I always see myself coming back to Africa.

DE SAM LAZARO: Amid all the poverty and suffering, they say, are great rewards, like sharing good news with young Mcanthony’s grandfather.

Dr. BUCK: He looks fantastic! You’re doing a really great job taking care of him.

DE SAM LAZARO: Or watching the teen club on the clinic grounds, knowing that without this clinic few of these young patients would still be alive.

For RELIGION & ETHICS NEWSWEEKLY, this is Fred De Sam Lazaro in Lilongwe, Malawi.

The post Pediatric AIDS Corps appeared first on Religion & Ethics NewsWeekly.

BOB ABERNETHY, anchor: Here at home, another debate about testing medicine on children. Until recently, vaccines and drugs used on children were tested first on animals, adults, and, sometimes, on older children. But not on young children. That created enough uncertainty about what worked, and what the doses should be, that the government has now begun to encourage and in some cases require that drugs for children first be tested on children, even though testing also brings problems. Betty Rollin begins her report with a study testing a nasal spray that might replace shots as a means of preventing children’s flu.

BETTY ROLLIN: He’s too young to know, but 15-month-old Jack Metcalf is not just a patient; he’s a participant — one of 4,000 nationwide — in a study that will show the efficacy of a particular nasal spray to prevent flu in children.

Jack’s mother looks forward to one less a year of these.

TONI METCALF: I hope that the flu mist is approved and will become available for children to use, as opposed to a shot.

ROLLIN: One of the researchers for this study and for others is Dr. Richard Schwartz, a pediatrician in northern Virginia, who has struggled for years with the problem of inadequate information about children’s medicine.

Dr. RICHARD SCHWARTZ (Pediatrician and Researcher): There are a lot of medicines out there that have never been tested on children so it leaves the doctors high and dry in a legal quagmire, using them without FDA approval because they have evidence above 12, above 18, but not for younger children.

ROLLIN: Sometimes the medicine is appropriate for the child, but the dosage is wrong.

Dr. DIANNE MURPHY (FDA, Director of the Office of Pediatric Drug Development and Program Initiatives): That dose may be too high. If it’s too high, the child gets toxic and we have to take them off of that dose, and they are denied that medicine. Or the converse, give them the medicine at the low dose and that doesn’t work, and put them on another medicine and that medicine may be more toxic.

ROLLIN: Under the 1997 Modernization Act, which has recently been re-authorized by President Bush, drug companies have incentives to test existing drugs that are prescribed for children, on children. In addition, the FDA encourages that new drugs to be used by children must first be tested on children.

The FDA estimates more than 36,000 children are currently enrolled in clinical trials from medicine taste testing to cancer treatments.

Dr. MURPHY: We are finding out so many important things in products, some of which have been used on children for years. So we think it is very vigorous and healthy as long as we’re careful.

ROLLIN: The problem is weighing the possible benefits of the test against the dangers to the participants, who are too young to give informed consent.

Dr. MURPHY: We know that there are sometimes issues, questions about, should kids who don’t have a disease be enrolled? What about placebo-controlled trials in children? What about kids who are very vulnerable because they have some neurological problems, how do you deal. You can’t say don’t use drugs on those children, but how do you do it in the safest way?

ROLLIN: Safety is indeed the major issue. Federal guidelines designed to ensure the safety of children, require both parental consent and when, possible, the child’s assent. In addition, the research should be of some benefit to the child being tested. And risk should be minimal.

But Professor Adil Shamoo of the University of Maryland School of Medicine believes that children participating in trials are still at greater risk than they should be.

Professor ADIL SHAMOO (University of Maryland School of Medicine): By definition, research is non-therapeutic it means you are testing something brand new and you don’t know its outcome regardless of what they claim in their advertisement that this medicine is better than the existing medicine.

ROLLIN: Researchers like Dr. Schwartz are involved in testing medications with low risk, but other clinical trials involve more risk, and some children have been sickened and some have died.

Linda Smith, (not her real name), a registered nurse, had a seven year old son — now 18 — who suffers from HCM, hypertrophic cardiomyopathy, a condition which thickens the heart and can cause sudden death. Linda’s cardiologist suggested that she take her son to the NIH, where Dr. Lameh Fananapazir was conducting a trial on pacemakers.

By implanting a pacemaker like this one in the hearts of children with HCM, Dr. Fananapazir hoped to find whether symptoms could be alleviated or the disease reversed. Dr. Fananapazir won approval from the NIH review board based on his research implanting pacemakers in adults. And from 1993 through 1996, at least 55 children, ages 5 to 15, participated.

But there were serious problems. Some families brought suit against the NIH — one for a wrongful death. At one point, Linda’s son almost died.

Ms. SMITH (Registered Nurse): When my son reached a critical point where we had to go somewhere else, I did start researching and said, “I am going somewhere else, he’s getting worse.” This particular physician told me, “No, you owe us six more months, the program is for five years.” And we were six months short of that. He didn’t want us to leave until the five years were up. Well, my son had a cardiac arrest three days later, and I ended up doing mouth to mouth on him.

ROLLIN: Linda believes that she was discouraged from pursuing other treatment options, like surgery, which turned out to be what her son needed.

Ms. SMITH: They were presented to me as such high-risk options that we wouldn’t want to even consider having them done.

ROLLIN: Dr. Schwartz feels that the vast majority of researchers behave differently.

Dr. SCHWARTZ: If you keep your ethics high and you report things that are adverse reactions that are happening and you are honest with your patients, I think that will benefit everybody.

ROLLIN: There are always risks enrolling children in clinical trials. But there also risks, big risks, doctors say, in treating children without knowing more about what works.

I’m Betty Rollin for Religion & Ethics NewsWeekly in Vienna, Virginia.

ABERNETHY: Recently, the NIH settled a lawsuit brought by several families who had participated in the pacemaker study. The NIH didn’t admit to any wrongdoing and declined to comment further.

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