Baby Rico Martinez Nagel: The collision of curent medical practices, Child Protective Services and Families

                                   
 "Modern Medicine would rather you die using its remedies than live by using what physicians call quakery."--Robert Mendelson,MD

The path we walk as parents, grandparents is difficult, treacherous, emotionally and financially draining, when we disagree with the medical treatment given to our children.  Refusing treatment (no matter how toxic and brutal) for our children is regarded in the medical community to be a red flag.  Often this means the threat of removal of our children from our homes by Child Protective Services.  It means our lives are laid bare and placed under the microscope to prove or disprove that we are not a danger to our babies and children.  Accepting the standard medical treatment often means watching our children suffer the pain of treatments that may or may not make life better for our children.  In cases such as cancer, it may destroy the quality of life and only prolong the suffering.  Often the treatment results in suppressing one cancer only to have another cancer appear years later.  

Baby Rico Martinez Nagel does not have cancer.  His health issue is that he tested positive to an hiv test given to him, after he was born.  His mother, Lindsey Nagel was adopted as an infant from Romania in 1990.  When Lindsey was brought to the US by her parents, Cheryl and Steve Nagel, she tested positive for hiv (she tested negative in Romania).  The prognosis at that time for her survival was grim, a few years at most.  She was started on AZT and progressively got sicker and sicker.  They stopped the AZT and her health gradually returned.  Steve Nagel has related in various publications that Lindsey was one of 12 children under 10 diagnosed with hiv in the state of Minnesoto and she was the only one who survived. Steve Nagel believes his daughter survived because she stopped taking AZT.  Lindsey gave birth to Rico in December of 2012. Rico was tested for hiv in the hospital and started on AZT and various other drugs (Lamivudine also known as 3TC, antifungals, antibiotics, etc).  He had feeding difficulties and ended up having a feeding tube inserted into his stomach, which leaked, creating further complications.  For a better understanding then I can give about the situation and to view the video of Rico being taken by Child Protective Services. (recent news is that Baby Rico is now on is way to his home or there already)
 http://saverico.com

As a mother, I find it heart-wrenching and heart-breaking to see a new mother have her baby taken away from her.  An infant is taken away because of a difference in opinion regarding testing and treatment of hiv.  Current policy in the USA seems to side with medical opinion over parental opinion.  I am at a loss to fully understand the situation with Baby Rico and the whys of taking a baby from a mother who has been trying to comply with the medical treatment.  So rather than writing about the situation when I don't fully have the facts, I'd rather discuss some of the issues regarding mother-to-child transmission of hiv. 

In 1994 a study reported in the New England Journal of Medicine called ACTG 076 in which AZT was reported to reduce perinatal hiv transmission.  The conclusion of the study done by the Pediatric AIDS Clinical Trials Group was, "In pregnant women with mildly symptomatic HIV disease and no prior treatment with antiretroviral drugs during the pregnancy, a regimen consisting of zidovudine [AZT] given ante partum and intra partum to the mother and to the newborn for six weeks reduces the risk of maternal infant HIV transmission by approximately two thirds." 
http://www.nejm.org/doi/full/10.1056/NEJM199411033311801 

By 1996, the NIH stated that with new data, were strongly "recommending to caregivers to offer AZT therapy to all pregnant HIV-infected women, regardless of the stage of disease."
http://www.nih.gov/news/pr/nov96/niaid-27.htm 

AZT was manufactured by Glaxo Wellcome (now GlaxoSmithKline).  There are side effects to this drug.  This is a drug that originally was intended to be used in cancer treatment but was considered too toxic and shelved until hiv/aids appeared.  Side effects listed in the 2010 HIV Nursing Curriculum by Baylor College of Medicine state that a common side effect is hematologic toxicity (anemia due to bone marrow suppresion or hemolysis, leukopenia, and thrombocytopenia), and other side effects as myopathy (muscle disease/muscular weakness), myositis (inflammation of the muscles--weakness, swelling, and pain), and liver toxicity.  
http://www.bipai.org/WorkArea/DownloadAsset.aspx?id=137 

In a book written in 2001 by Eleni Papadopulos-Eleopulos et al. entitled, "Mother to Child Transmission of HIV and it's Prevention with AZT and Nevirapine,"  the authors state, "However, the presently available data indicate that treatment with AZT increases, not decreases, morbidity and mortality in children."

So the study that changed what seemed to be standard medical protocol regarding pregnant mothers and hiv/aids meds was the ACTG 076 study.  And the reason was because the fear of transmission superceded the fears of toxicity.  Last night, I found myself looking at the authors of the ACTG 076 study.  While this study appears to have funding from the NIH (National Institute of Health)and NIAID (National Institute of Allergy and Infectious Diseases), many of the authors have had funding now or when the study came out from various pharmaceutical companies.  Some of the researchers have had GlaxoSmithKline funding (Glaxo Wellcome).  And one of the authors, Robert Coombs, is employed by GlaxoSmithKline as a Validation Analyst. Some of the authors have worked for or been funded by MedImmune, AstraZeneca, Bristol Myers, Abbott, Pfizer, Roche.  All of these pharmaceutical companies have a stakehold in hiv/aids medications or infant formula or hiv test kits.  And so how do we judge this study?  Do we dismiss how researchers are funded as irrevelant to the truth in medical science?

Technically the ACTG 076 study was funded by the NIH.  The NIH, like so many other US governmental agencies has public-private partnerships.  One of those partnerships is called the Grand Challenges for Global Health.  The NIH initiative is supported by the Bill and Melinda Gates Foundation, the Wellcome Trust (a trust derived from the company Glaxo Wellcome which is now GlaxoSmithKline), and the Canadian Institutes of Health Research.  Was this partnership in place at the time of the ACTG 076?  And how might this kind of partnership impact medical policy and practice?
http://ppp.od.nih.gov/pppinfo/examples.asp 

Finally, most importantly how accurate is hiv testing in newborns, when newborns carry maternal antibodies for 18 months or longer?  Standard practice according to the Baylor text book, entitled, "HIV Nursing Curriculum," and dated 2010 states the following on page 20, "In countries in which pediatric ARV therapy and infant formula are readily available and resources permit multiple tests, infants of HIV-positive mothers are tested at 14-21 days, 1-2 months, and 4-6 months."  I believe the reason there is a delay in testing is because testing in the newborn period is so unreliable.  In 2001, PCR testing for newborns was started at one month.  Further testing has to be done because of the problem of maternal antibodies.  PCR testing was never intended to be used as a diagnostic for hiv infection. 

Baby Rico was tested within the first 24-48 hours of life.  This appears to be contrary to the medical protocol put out by Secure the Future/Bristol Myers Squibb/Baylor College of Medicine text book.  Their approach shows a much more cautious approach to a presumption of hiv transmission in the newborn period.  The disregard to caution by authorities seems brought on by fear, panic and certainly some degree of arrogance about the rightness of calling in Child Protection Services.
Copyright 2013 Valerie W. McClain