March 9, 2013 3:42 pm TheUnhivedMind 6 Comments

“I was required by law to take an HIV test in June 1995. The test is mandatory in Colorado for pregnant women, and I was expecting my second child. I was shocked when the result came back positive, because I’d been married and monogamous for nine years. I started taking AZT in my fifth month. After ten months on AZT, I was sick all the time. I had constant diarrhea, nausea, fever, night sweats and was totally exhausted. I was crawling to the bathroom and vomiting for hours. My doctor told me the HIV was making me ill, and that the virus had mutated into a form that was resistant to AZT. Further drugs turned my skin yellow with jaundice. Since it was clear that the drugs weren’t keeping me from getting AIDS and were actually destroying my liver, I let my prescription run out. I figured I’d rather die from AIDS than liver failure.

Almost immediately after I stopped taking my medicines, within a matter of days I started to feel much better…. My daughter is considered a success by medical standards because she tests negative, but I don’t care about HIV anymore. I am concerned about the effects of the AZT she was poisoned with while I was pregnant. Rachel has an enlarged cranium, seizures and a strange deformity near the base of her spine. At age three she still does not speak. I went to this conference on HIV and pregnancy at The Children’s Hospital here in Denver. A lot of mothers there had taken AZT during pregnancy and had their kids with them. Every single one of those kids had enlarged craniums. Their heads looked exactly like Rachel’s. They’re all AZT babies. I’m working now to repeal Colorado’s mandatory [HIV] testing law.”

-This letter was from Christine Maggiore’s book, ‘What if Everything You’d Been Told About AIDS was Wrong’

Eliza Jane Scovill (Christine’s daughter) Died of an Allergic Reaction to Amoxicillin

http://theunhivedmind.com/wordpress2/?p=17521

Comments

1. TheUnhivedMind on March 9, 2013 at 3:43 pm said:

Baby Garfield latest victim in the war on AIDS

Caught in the cross-fire of AIDS hysteria is an 18 month-old boy believed to have tested HIV positive in mandatory newborn screening (in NY). Although the boy’s medical records do not show the results of this screening test, and his most recent HIV test is Indeterminate, he was taken from his home by seven police officers after his mother sought a second opinion on AIDS drug treatments that were making her child ill.The boy’s older sister was also taken in the “AIDS raid” but was later returned to her family when authorities noted her negative HIV status.

Our amazing and generous attorney has offered to assist the family to prepare for a custody hearing later this month. We also found an unprejudiced pyschiatrist to provide an evaluation of the parents’ mental competency–they are accused of “being in denial” and are required to submit to psychiatric evaluation.

Today, a psychoanalyst offered to assess and provide testimony on the damage the child suffers being separated from his family, and a well respected pediatrician has agreed to take him as his patient and treat the boy as an individual instead of an HIV positive diagnosis.

We are seeking donations to help cover costs involved in preparing the family for their custody hearing. The family needs $1,000 to pull together the necessary legal documents and pay for doctor visits and lab work that is not covered by their insurance. If you can pitch in any amount toward this goal, please let us know as soon as possible.

If what you’ve read so far has failed to inspire your concern and your generosity, please consider the cruel and inept system that is keeping the parents and child apart:

The child’s first HIV test result from his newborn screening is missing from his records along with much other pertinent information

The child’s first “viral load” test was negative and this test is also missing from the records, but is referred to in the records several times

The boy’s most recent viral load test was performed at two different labs and came back with dramatically varying results

The result from his most recent HIV Wesern Blot antibody test is Indeterminate- His mother was told she had to take an HIV test in order to regain custody, but she has not been given the results of the test although the test was performed three weeks ago. At the time of her HIV test, the test counselor assumed the mother was HIV positive, and based on that assumption, told the mother to draw up her will and figure out who will get custody of her two children when she dies- The boy was healthy until he began recommended treatment with AIDS drugs

The department of social services accused the mother of negligence after the mother had to reschedule an appointment for a second opinion. Although the appointment was rescheduled by the hospital and not the mother, and the mother was careful to notify DSS of the change in order to show that she was not negligent with regard to the medical care of her son, under orders from DSS, her children were removed from their home by seven police officers at 10:30 PM on July 17.

The parents have been allowed to see their son only one hour a week since he was taken in July.

Christine Maggiore

Founder/Director, Alive and Well AIDS Alternatives

christine@aliveandwell.org

Subject: Update on Baby Garfield

Date: Tue, 03 Oct 2000

From: Christine Maggiore Organization: Alive and Well

A few weeks ago we alerted this list to the case of Baby Garfield, an 18 month old boy from New York caught up in the system of mandatory newborn HIV screening recently initiated in that state.

After allegedly testing positive at birth (the actual test was missing from his medical records) and following a series of inconsistent lab work and other questionable tests and recommendations, his mother sought a second opinion about the AIDS drug treatments prescribed for her healthy son.

A few days later, under orders from the department of social services, Baby Garfield was taken from his home by seven police officers. He was placed in foster care and put on an aggressive regimen of mandatory medication. His parents were allowed to see their child only one hour a week while awaiting a hearing to establish long-term arrangements for his custody.

When the parents found Alive and Well, Garfield had been in a foster home for more than a month and the custody hearing was just a few weeks away.

In record time, helped by your donations and good wishes, we pulled together a legal defense team led by Alive and Well’s pro bono attorney Denis Sheils of Philadelphia, PA. Although Denis is one of the best and busiest attorneys in the country, he gave his time–including weekends–to the effort to return Baby Gafield to his parents. A coincidental interview with a national news program brought me and my family to New York for the custody hearing.

I am happy to report that the day after the hearing, Garfield was back in his mother’s arms. The victory was resounding as the state has decided not to appeal the judge’s decision. Outside the courtroom, after a round of hugs and tears of relief, I shared your e mail messages with the family. It was a great honor to present them with all the good wishes and promises of donations from across the the country and around the world–help and concern came from as far away as Australia, Canada, England, and Iceland.

In celebrating this legal victory we give our heartfelt thanks to Dr. Rudolph Ballentine, Dr. Ina Becker and Dr. Larry Palevsky who were essential components of the legal victory; to Lynn Gannett who served as the family’s personal support group; to Denis Sheils for his incredible generosity and skills; and to all of you who continue to make it possible for Alive and Well to be here for those who need us most.

Thank you!

Christine Maggiore

1. TheUnhivedMind on March 9, 2013 at 3:59 pm said:

OPPOSED TO AIDS DRUGS, MOTHERS GO UNDERGROUND

Mainstream doctors say ‘fringe’ science is risking lives of children

By Mark Kennedy

The Ottawa Citizen 7 Sept. 1999

http://www.virusmyth.com/aids/news/mkunderground.htm

A growing number of HIV-positive mothers in Canada and the United States are going into hiding as part of an “underground railroad” to avoid having their children treated with anti-AIDS drugs.

Some of the Canadian women, concerned that child-protection agencies will take away their babies, are fleeing to the U.S. to remain anonymous and stay beyond the reach of doctors.

The development is part of a recent trend that is infuriating the country’s leading AIDS doctors and researchers.

A group of U.S.-based dissident scientists has argued for years that HIV is not the cause of AIDS and there’s no point in taking the drug cocktails designed to prevent the virus from turning into AIDS.

They argue the side effects of the drugs are so severe that they pose a greater risk to the patient than HIV itself.

Montreal doctor Mark Wainberg, president of the International AIDS Society, dismisses the dissidents as “fringe people” who are trying to “make themselves out to be more important than they are.”

He wishes people would just ignore them so their views aren’t given credence.

“Let me give you an example. There are people out there who deny that the Holocaust happened. Do we want to give them equal credibility?”

Nonetheless, it appears the message is getting out, despite the best efforts of the medical community to persuade people with HIV that the anti-viral drugs offer the best, if not the only hope, of staying healthy.

Indeed, some HIV-positive mothers have chosen to go to court to prevent doctors from administering the drugs.

In the past two weeks alone, two cases have made headlines. In Montreal, a 37-year-old woman, Sophie Brassard, is battling youth-protection authorities to regain custody of her two children, one of whom is a seven-year-old whom doctors want to treat for HIV.

And in London, England, a court is being asked by public health officials to force a couple to have their four-month-old daughter tested for HIV. They fear the girl’s mother, who is HIV-positive, may have transmitted the virus to her before or since birth. The child is being breast-fed against medical advice.

These court battles may just be part of a larger groundswell. In Virginia, a patient-advocacy group that provides legal defence for HIV-positive mothers already has nine cases under way. Since last spring, the group has been contacted by 60 women seeking legal help to bring their case to court.

“We think this is going to steamroller,” says Deanne Collie, executive director of the group, the International Coalition for Medical Justice.

The group says its mission is “to provide for the defence of human and civil rights, including the right to free expression in the arena of science (and) … the right of parents to participate in the choice of medical treatment for their children.”

Ms. Collie says her office is swamped with calls from women seeking help. Already, she says, there is an “underground railroad” of American women constantly crossing state lines to keep one step ahead of child- custody officials.

Ms. Collie says she received a call last March from a young HIV-positive woman in Toronto who had just given birth. The woman came from a well-to-do family, lived with her parents, and held a good, professional job. At the time, her parents and the father of the newborn supported her decision to not treat the baby with HIV drugs.

But the next month, the young woman called Ms. Collie again. She had moved to the U.S. after her parents informed a doctor — just before the baby was due for a regular checkup — of her HIV status. The woman now works as a waitress and is paid in cash only.

It’s not an unusual story, says Carl Strygg, spokesman for the Toronto chapter of Health Education AIDS Liason (HEAL), an AIDS support group with 24 branches across North America. The group doesn’t believe the merits of HIV drug therapies have been proven.

“HIV-positive women are being persecuted,” says Mr. Strygg, who also confirms how Canadian woman have “gone into hiding.”

“It’s a terrible tragedy, and I think it will get worse until more women are brave enough to stand up to the establishment and demand that their rights to make informed choices on behalf of their children are protected.”

But Dr. Philip Berger, a Toronto doctor who treats AIDS patients, says the benefits of HIV drugs are undeniable. If drugs are given to a baby within hours of birth, the odds of it developing HIV can be significantly reduced. The odds are even better if the mother also takes the drugs during pregnancy.

“Adults with any disease have the right to refuse treatment,” says Dr. Berger. “But with children, it’s far more complicated. Once the child is born, I think the state has a duty to protect the child for any disease for which a parent is refusing treatment where the benefits are clear.”

But Ms. Collie says many women aren’t going to back down. She says courtrooms will become the battleground for a long-stifled scientific debate over whether HIV causes AIDS.

Ms. Collie says scientists should examine other theories, ranging from whether HIV has nothing to do with AIDS, to whether it is just one of many factors that contribute to the disease.

In San Francisco, the argument is echoed by David Rasnick, a chemist who is president of the Group for the Scientific Re-Appraisal of the HIV/AIDS Hypothesis.

The group, founded in 1991, has attracted the support of more than 2,000 scientists and doctors, many of them with impressive academic credentials. Still, it is widely regarded by the medical establishment as a fringe organization, touting a view that is dangerous to patients.

Mr. Rasnick says there is “no evidence” in the vast medical literature to show solidly that HIV causes AIDS. There are only “assertions,” he says.

AIDS is defined as a breakdown in the body’s immune system; its victims die of diseases and infections the body can no longer fight, such as cancer or pneumonia. Since 1984, the most widely accepted theory is that the HIV virus is the agent that causes the immune system’s disintegration.

But the dissidents say HIV is probably a harmless particle that may have been in some families’ genes for generations. They contend AIDS is simply a label applied to a number of diseases that have always existed, such as cancer and pneumonia.

“AIDS is not contagious, it’s not caused by HIV and it’s not spread by sexual transmission,” says Mr. Rasnick.

So why hasn’t the medical community, after 15 years of research and billions of dollars, admitted it is wrong?

“The biggest hurdle to understanding AIDS and setting the whole thing straight is the magnitude of the embarrassment,” says Mr. Rasnick.

“It would take superhuman courage and integrity in order for these folks to now, at such a late date, say, ‘Oops, folks. Sorry, we may have made a mistake.’ ”

In Montreal, Dr. Wainberg is absolutely furious with such talk.

“HIV is unequivocally the cause of AIDS,” says Dr. Wainberg, director of the McGill Centre for AIDS.

Furthermore, he notes that pediatric AIDS is now virtually extinct in Canada — there were two cases last year compared to 39 a decade ago — thanks to drug cocktails which are given to pregnant women and newborn babies.

The problem, he says, is that if the dissidents are given a platform, people might start believing them.

“There are no shortage of desperate people out there who are willing, in some cases, to be taken advantage of.”

1. TheUnhivedMind on March 9, 2013 at 4:00 pm said:

NO AZT FOR MY BABY, PLEASE

Why Parents With HIV Don’t Treat Their Kids

By Nicholas Regush

ABCNews.com 15 September 1999

http://www.virusmyth.com/aids/hiv/nrsecop54.htm

I confess. I tried but couldn’t shut down my computer when I took some time off from writing this column. The extra leisure allowance that flooded into my life allowed me to do a little snooping into Internet health sites, like drkoop.com, for example.

I had been planning to write about a growing debate over whether newborns of HIV-positive women should be required to take the drug AZT.

What did drkoop.com have to say about this smoking controversy in its section on HIV-positive pregnant women and the chances of passing the illness on to their babies? Nothing, actually. There was also nothing about the growing number of HIV-positive women who’ve decided they don’t want their kids to take AZT.

And therefore there was no mention that various medical authorities throughout this country are trying to force some of these women to give their babies the drug. Some who don’t comply have their children snatched from them or face threats that they will. The drkoop.com site makes it seem as though HIV-positive women can all freely discuss with their doctors “options” for protecting their children against AIDS.

Well, some people don’t see it that way.

Parents’ Rights vs. Medical Dogma

Last week I met with Deane Collie, the director of the Virginia-based International Coalition for Medical Justice, a group that fights for the right to make medical decisions without government interference. They’re helping women go to court to prevent doctors from giving AZT to their children.

The coalition has already heard from about 60 women who don’t believe HIV is the cause of AIDS, and/or that AZT is going to help their youngsters. In fact, some of the women believe AZT will harm their children. Nine legal cases are under way, and Collie believes this is just the tip of the iceberg. She expects an explosion of requests in the near future as state governments act to force families to comply with AIDS treatment dogma.

In Bangor, Maine, Valerie Emerson, an HIV-positive single mother, gave birth to a daughter and son who also turned up positive. Her daughter Tia was given AZT and died around age 4. Emerson believes the drug hastened Tia’s death. For this reason, she stopped the medication for her son, Nikolas. Tipped off by Nikolas’ doctor, the Maine Department of Human Services accused Emerson of neglect and sought custody of her son.

Emerson went to court and won her case, and so far, Nikolas is doing fine without the medication.

Mothers on the Run

In Eugene, Ore., however, Kathleen and David Tyson didn’t fare so well in the judicial system. Kathleen (who is HIV-positive) refused to give AZT to her son, Felix (who is HIV-negative), but was forced to do so for 12 weeks by the state. In this case, armed guards came to the maternity ward threatening to seize Felix if the Tysons didn’t agree to allow AZT treatment. Kathleen had also wanted to breast-feed Felix, but the court ruled against her. (Many scientists believe HIV can be transmitted via breast milk.)

Coalition for Medical Justice Director Collie says that the group is in touch with HIV-positive women who are on the run from the “law,” staying one step ahead of authorities wanting to seize their children.

So is the coalition a kooky organization? Are the Emersons, Tysons and other families refusing AZT treatment irresponsible? Or are the health authorities the ones wearing the dunce caps?

Tune in next week for a look at the intriguing science underlying this issue.

Nicholas Regush produces medical features for ABCNEWS. In his weekly column, published Wednesdays, he looks at medical trouble spots, heralds innovative achievements and analyzes health trends that may greatly influence our lives. His latest book is The Breaking Point: Understanding Your Potential for Violence.

1. TheUnhivedMind on March 9, 2013 at 4:03 pm said:

New York’s HIV experiment

By Jamie Doran

Reporter/producer, Guinea Pig Kids

http://newsvote.bbc.co.uk/mpapps/pagetools/print/news.bbc.co.uk/1/hi/programmes/this_world/4038375.stm

HIV positive children and their loved ones have few rights if they choose to battle with social work authorities in New York City.

COMPLAINT UPHELD

Following a complaint, an investigation by the BBC’s Editorial Complaints Unit has identified serious failings with this programme and ruled that some of the online material based on it was misleading.

The issues raised in this programme prompted the New York authorities to commission an independent study.

Jacklyn Hoerger’s job was to treat children with HIV at a New York children’s home.

But nobody had told her that the drugs she was administering were experimental and highly toxic.

“We were told that if they were vomiting, if they lost their ability to walk, if they were having diarrhoea, if they were dying, then all of this was because of their HIV infection.”

In fact it was the drugs that were making the children ill and the children had been enrolled on the secret trials without their relatives’ or guardians’ knowledge.

As Jacklyn would later discover, those who tried to take the children off the drugs risked losing them into care.

The BBC asked the Alliance for Human Research Protection about their view on the drug trials.

GUINEA PIG KIDS

Tuesday, 30 November, 2004

1930 GMT on BBC Two (UK)

Spokesperson Vera Sherav said: “They tested these highly experimental drugs. Why didn’t they provide the children with the current best treatment? That’s the question we have.

“Why did they expose them to risk and pain, when they were helpless?

“Would they have done those experiments with their own children? I doubt it.”

Power and authority

When I first heard the story of the “guinea pig kids”, I instinctively refused to believe that it could be happening in any civilised country, particularly the United States, where the propensity for legal action normally ensures a high level of protection.

But that, as I was to discover, was central to the choice of location and subjects, because to be free in New York City, you need money.

“ I’ve had many ACS case workers tell me: ‘We’re ACS, we can do whatever we want’ ”

David Lansner, family lawyer

Over 23,000 of the city’s children are either in foster care or independent homes run mostly by religious organisations on behalf of the local authorities and almost 99% are black or hispanic.

Some of these kids come from “crack” mothers and have been infected with the HIV virus. For over a decade, this became the target group for experimentation involving cocktails of toxic drugs.

Central to this story is the city’s child welfare department, the Administration for Children’s Services (ACS).

The ACS, as it is known, was granted far-reaching powers in the 1990s by then-Republican Mayor Rudi Giuliani, after a particularly horrific child killing.

Within the shortest of periods, literally thousands of children were being rounded up and placed in foster care.

“They’re essentially out of control,” said family lawyer David Lansner. “I’ve had many ACS case workers tell me: ‘We’re ACS, we can do whatever we want’ and they usually get away with it.”

Having taken children into care, the ACS was now, effectively, their parent and could do just about anything it wished with them.

‘Serious side-effects’

One of the homes to which HIV positive children were taken was the Incarnation Children’s Center, a large, expensively refurbished red-bricked building set back from the sidewalk in a busy Harlem street.

It is owned by the Catholic church and when we attempted to talk to officials at Incarnation we were referred to an equally expensive Manhattan public relations company, which then refused to comment on activities within the home.

Hardly surprising, when we already knew that highly controversial and secretive drug experiments had been conducted on orphans and foster children as young as three months old.

We asked Dr David Rasnick, visiting scholar at the University of Berkeley, for his opinion on some of the experiments.

He said: “We’re talking about serious, serious side-effects. These children are going to be absolutely miserable. They’re going to have cramps, diarrhoea and their joints are going to swell up. They’re going to roll around the ground and you can’t touch them.”

He went on to describe some of the drugs – supplied by major drug manufacturers including Glaxo SmithKline – as “lethal”.

When approached by the BBC, Glaxo SmithKline said such trials must have stringent standards and be conducted strictly in accordance with local regulations.

Battle of wills

At Incarnation, if a child refused to take the medicines offered, he or she was force-fed through a peg-tube inserted into the stomach.

Critics of the trials say children should have been volunteered to test drugs by their parents.

When Jacklyn Hoerger later fostered two children from the home where she used to work with a view to adopting them, she discovered just how powerful the ACS was.

“It was a Saturday morning and they had come a few times unannounced,” she said. “So when I opened the door I invited them in and they said that this wasn’t a happy visit. At that point they told me that they were taking the children away. I was in shock.”

Jacklyn, a trained paediatric nurse, had taken the fatal step of taking the children off the drugs, which had resulted in an immediate boost to their health and happiness.

As a result she was branded a child abuser in court. She has not been allowed to see the children since.

In the film Guinea Pig Kids, we follow Jacklyn’s story and that of other parents or guardians who fear for the lives of their loved ones.

We talk to a child who spent years on drugs programmes which made them and their friends ill, and we discover that Incarnation is not an isolated case. The experiments continue to be carried out on the poor children of New York City.

Guinea Pig Kids was broadcast on Tuesday, 30 November, 2004, at 1930 GMT on BBC Two (UK).

Story from BBC NEWS:

http://news.bbc.co.uk/go/pr/fr/-/1/hi/programmes/this_world/4038375.stm

Published: 2004/11/30 09:21:58 GMT

1. TheUnhivedMind on March 9, 2013 at 4:06 pm said:

WHERE PARENTS TURN FOR HELP TO PROTECT THEIR CHILDREN

CPS Watch (Child Protective Services Watch) – Currently, CPS Watch has thousands of members in all 50 states and Canada. Members of CPS Watch come from very diverse backgrounds; parents, step parents, foster caregivers, social workers, attorneys and even judges make up the membership of CPS Watch. All are concerned about the manner in which CPS agencies are treating families.

AMERICAN FAMILY ADVOCACY CENTER There is a war raging over the control of our children. The cry of outrage is spreading across this nation, as increasing numbers of children are wrongfully ripped from their loving parent’s arms and secreted away by the unscrupulous agents of the State.

The Citizens Commission on Human Rights If your rights or the rights of someone you know have been violated by psychiatry, immediate action must be taken. The Citizens Commission on Human Rights (CCHR) stands ready to assist you. They do not give medical or legal advice but they can help you in how and where to file a complaint against psychiatric abuse. The Citizens Commission on Human Rights (CCHR) is a non-profit, public benefit organization dedicated to exposing and eradicating criminal acts and human rights abuses by psychiatry.

A Voice for Children helps parents who are FALSELY ACCUSED of child abuse, lobbies for Civil Rights, and the ELIMINATION of corrupt officials, judges, bureaucrats. Pamela and Will Gaston are highly involved in “Rattling the Gates of Hell” of the bureaucratic and judicial corruption in the state of Oregon. We support Measure 1 to overturn Oregon Constitution Article VII (amended) and restoring the original.

American Family Rights Association is the national association of children’s, mothers, fathers, parents, family, justice, freedom advocates. – American Family Rights Association OPPOSES the insertion of the coercive power of government into the FAMILY. We oppose false allegations, malicious prosecution, anonymous reporters, and the denial of Civil Rights and Miranda Rights to the accused. We oppose the denial of Civil Rights to children, and government presumption that they know what is “In the best interest of the child”, and anything government does to children is unquestionable. We oppose immunity and impunity of CPS Social Workers, law enforcement officers, and judges from being held accountable for deliberate wrong-doing and corruption. As parents- We have the right, guaranteed by law and the Constitution to make our own choices in our relationships and marriages; birthing and raising our children; instilling our own values into our children; controlling our children’s education, health, and discipline; controlling what social values we chose to accept, or not, for ourselves and our children, without coercive governmental intervention and control.

A Parent’s Choice Crusading for the rights of parents to choose” – School systems now feel they have the right to decide wether or not our children are mentally healthy, and use Child Protective Services authorities with no background or knowledge of our families to push their views into our homes. Child Protective Services authorities have taken on the role of Big Brother, yanking children from decent, safe homes at the whim of workers who are paid to disrupt families. Too many families across the United States are torn apart simply because a parent has been intimidated by a school system put in place to EDUCATE our children, not become medical specialists, and bully parents into accepting mental labels for children only to profit from more federal money. MONEY is the bottom line in their game, and they use Child Protective Services and the courts to enforce their “rights”

Without your voice, there is no choice! Citizens For Health is a free, grassroots, consumer advocacy group that champions public policies empowering individuals to make informed health choices. Let your voice be heard!

MOMM provides information and peer support to current and expectant mothers with concerns about HIV testing and pharmaceutical AIDS treatments, and offers facts on healthy childbirth, breastfeeding, and non-toxic immune therapy with the goal of enabling mothers to make truly informed choices about these important issues. HIV testing for expectant mothers is now mandatory in two states and has become a routine part of prenatal diagnostics. In every state in America, an expectant mother’s consent is no longer required for HIV screening. Other than convicted criminals, expectant and current mothers and children are the only persons in this country subject to involuntary HIV testing and mandatory AIDS medication at the behest of public health and child welfare agencies.

Mothers Opposing Mandatory Medicine (MOMM)

MOMM provides crucial data and peer support to expectant and current mothers faced with suggested or required HIV testing or pharmaceutical AIDS treatments, and offers information on options for healthy childbirth, infant feeding, and family health.

As HIV tests have become a routine part of prenatal diagnostics and are even mandatory in some states, social service and public health agencies are testing the concept of mandatory medication for mothers and children. Parents faced with critical decisions can turn to MOMM for access to vital facts that enable them to make informed choices about HIV, AIDS and health. MOMM also provides referrals to doctors and birth clinics that will respect parents’ medical rights and decisions.

Additionally, MOMM offers a national peer support network of healthy HIV positive mothers and families, and acts as an information resource for doctors, midwives, women’s health advocates, and women’s and children’s health organizations throughout the country.

AFAA/Alive and Well is currently seeking funds to create a MOMM web site, to fund an on-going study of HIV positive mothers who choose to breastfeed, to produce educational materials that address the specific needs and concerns of HIV positive diagnosed women, and to expand our national network of obstetricians, pediatricians, midwives and birth clinics that honor parents’ informed decisions about their own and their families lives and health. more info at http://www.aliveandwell.org/

1. TheUnhivedMind on March 9, 2013 at 4:09 pm said:

HIV=AIDS Controversy: Judicial Opinion

http://tmh.floonet.net/articles/clapp.shtml

The life of a 4-year old child, who had tested positive for HIV and had faced the prospect of enforced treatments, was spared by a Maine judge in a decision which, among other things, underscored the fact that AIDS therapies are tantamount to poisoning by prescription.

STATE OF MAINE

PENOBSCOT, SS. DISTRICT COURT

Located at Newport

Civil Action

Docket No. NEW-98-PC-17

IN RE: NIKOLAS EMERSON

JUDGEMENT ON PETITION FOR CHILD PROTECTION ORDER

Hearing held: September 10, 1998

FINDINGS OF FACT

The Maine Department of Human Services has filed this petition for order of child protection on the basis of an allegation that Valerie Emerson, the custodial parent of Nikolas Emerson, is exposing her son to circumstances of jeopardy to the child’s health or welfare by refusing to provide for him necessary medical treatment for his illness. Nikolas, age four, has been diagnosed as being infected with human immunodeficiency virus (HIV). Nikolas’s mother, father, Roland Dubay, and sister, Tia Dubay were all diagnosed with the same illness. Mr. Dubay and Ms. Emerson are divorced and Ms. Emerson has been allocated the exclusive right to make all provision for the children’s medical treatment. Mr. Dubay is currently receiving a medically prescribed regimen of drug therapy for his condition. He is not a resource for care or custody of Nikolas. Ms. Emerson has received similar drug therapy prescribed by her family physician, Jean Benson, M.D. Ms. Emerson’s oldest child, Zakary, and her youngest child, Jacob, are apparently not infected with HIV. Ms Emerson was diagnosed as being HIV positive during her pregnancy with Jacob. She took the medically prescribed drug treatment during her pregnancy and followed appropriate medical advice to avoid infecting the infant after birth. However, not liking the side effects of the drug treatment, she discontinued it for herself.

On January 22, 1997 Tia Dubay died of complications directly related to her HIV condition despite being on a medically prescribed drug therapy treatment. She died a few days short of her fourth birthday and suffered terribly during the last many months of her life. Understandably, this circumstance shook what faith Ms. Emerson had with such powerful drug therapy. However, on her family doctor’s advice she reluctantly started Nikolas on similar drug therapy in the fall of 1997. Nikolas suffers periodic ear and eye infections and bouts of pneumonia as a result of the effects of his suppressed immune system. For every such occurrence Ms. Emerson brings Nikolas to appropriate medical providers. She does not always agree with the specifics or modes of prescribed treatment because she distrusts invasive procedures, but has never let her position block ultimate treatment. This active involvement and micro-management of her children’s hospital/medical treatment often irks the doctors and nurses involved and sometimes frustrates them when she insists in avoiding procedures and over-night hospitalization or takes a fatalistic approach to the terminal nature of HIV. However, in the opinion of Dr. Benson, who has occasionally been inconvenienced herself by Mr. Emerson’s attitude or approach, this mother’s actions have never risen to a level of neglect or withholding of vital medical treatment for her children. The court has reviewed all medical records in this regard and agrees with this assessment. Dr. Benson actually sees this mother more often in her family practice than she does other mothers of children under care.

In the late summer of 1997 Dr. Benson heard that an authorized trial program of aggressive drug therapy for children who have Nikolas’s illness was being conducted through the Infectious Diseases Clinic at Children’s Hospital in Boston. She lacks the expertise in this specialty and asked Ms. Emerson if she would like to look into getting Nikolas into the trial program. Ms. Emerson agreed and Dr. Benson referred the matter to Dr. John Milliken, a specialist in pediatric infectious disease practicing in Bangor. Dr. Milliken had dealt with Ms. Emerson, as he had occasionally consulted on the care of both Nikolas and Tia at Eastern Maine Medical Center. He agreed to examine Nikolas for participation in the program and make medical recommendations. He examined Nikolas and spoke with his mother in September, 1997. During this meeting he learned of Ms. Emerson’s strong distrust of powerful drug therapy for her son and her reluctance to enter the program. The court accepts as accurate that the drugs prescribed in such therapy (only highly active protease inhibitor plus two nucleoside analogue reverse transcriptase inhibitors (NTRI’s)) are very potent and cause often unpleasant side effects in adults and children. The drug therapies taken by Tia, Ms. Emerson, and Nikolas primarily involved one drug, AZT, an NTRI. This type of mono therapy, although accepted as conventional medical treatment until at least mid-1997, is now not recommended by the experts in the field for children of Nikolas’s age. Ironically, Ms. Emerson’s actions to discontinue such mono therapy appears, in hindsight, to predate, but be in conformity with the consensus of leading experts in the field as evidenced by the April, 1998 Guidelines of the Use of Antiretroviral Agents in Pediatric HIV Infection issued by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services. This is not due to Ms. Emerson’s advanced knowledge or expertise in HIV treatment, but instead is more a product of the ever-changing nature of the art of treating children with this condition. However, at the time Dr. Milliken saw Ms. Emerson and Nikolas in September, 1997 he did not believe that Ms. Emerson was administering the AZT to her son as reported by Dr. Benson. This was a belief based on hunch rather than any reliable evidence and apparently steeped in distrust of this patient who had questioned the advice of medical experts, including himself, who treated her children in the past. Troubled by this mother’s apparent rejection of his medical recommendations of highly aggressive antiretroviral therapy (HARRT) for her son, Dr. Milliken wrestled with the issue of whether this constituted child abuse through medical neglect and did not write his referral report to Dr. Benson until November 18, 1997. He admits that he finally made up his mind on this issue in November when he himself was updated on the newest state of medical theory in this area. In that letter he recommended the HARRT treatment protocol similar to that offered through the Children’s Hospital program, but went on to suggest that Ms. Emerson was incapable of adequately managing medical care for her son and that her parental right to manage his medical care should be removed. He also informed Dr. Benson that mono therapy was not appropriate for Nikolas at that time, and that Ms. Emerson’s delay in providing needed care for Nikolas was detrimental to his health. Dr. Milliken had, himself, unnecessarily delayed almost two months in responding to Dr. Benson’s referral.

The event which instigated this litigation was that Dr. Milliken also sent a copy of his consultation letter to the Department of Human Services. The Department contacted Ms. Emerson and Dr. Benson suggesting a referral for a second opinion from Kenneth McIntosh, M.D., a professor of pediatrics at Harvard Medical School, chief of Division of Infectious Diseases at Children’s Hospital, and head of the AIDS program referred to above. Dr. Benson, who felt that Dr. Milliken had been unfair, precipitous, and recklessly uninformed in mis-characterizing her patient, persuaded Ms. Emerson to agree to take Nikolas to Boston to consult with Dr. McIntosh. This meeting took place in March, 1998 and Dr. McIntosh saw no irrationality on the part Ms. Emerson. He felt that Nikolas would benefit from participation in the aggressive drug therapy program, but disagreed with some of the medical findings or conclusions set forth in Dr. Milliken’s consultation report. Further, he has never reported a child patient’s parents to child protective agencies for failure to accept medical recommendation to participate in this drug therapy program.

Ms. Emerson returned to Boston on her own later to have further discussion with Dr. McIntosh about the relative risks and long term effects of this proposed therapy on her son. Dr. McIntosh gave her all the information currently available from the limited experience the medical community has had in this treatment for children and could not give her any definitive information concerning long term effects. This drug treatment regimen is still in the evolving stages. Because of the stepped-up FDA approval of drugs and programs in this area due to public and political pressure nation-wide, all ongoing AIDS treatment programs (especially for children), when compared to traditional methods of approving medical drugs and treatment protocols, are experimental. In effect, treatment is being provided to sufferers of this illness at the same time as statistics and efficacy studies are being conducted. The various regimens are changing constantly, and it is expected that new and more effective drugs and treatment protocols will emerge each year, if not sooner. It can be fairly said that the HARRT regimen was still in experimental stages when Ms. Emerson first consulted with Dr. Milliken. The CDC published its guidelines for children’s HIV treatment over six months later, making this regimen conventional state of the art. Dr. McIntosh, who represents the best this country has to offer in this expertise, as well as Dr. Milliken, realize that society is probably just trying to do the best it now can in this puzzling area of medicine with the limited tools and knowledge at hand until the next generation of therapies become available from ongoing research. The state of this practice vividly demonstrates that medical healing is truly an art, not a science.

Dr. McIntosh feels that because Nikolas’s blood tests (viral load count and CD4 cell count) meet the CDC guidelines qualifying him for aggressive drug therapy, the child may well benefit from such treatment. However, this benefit cannot be quantified. No good estimation can be given either on whether or how much longer Nikolas will survive solely because he participates. Dr. McIntosh is of the opinion that no child should be started on this program unless his parents are fully accepting and in support of the treatment. No one seems to know what the long term effects this regimen will have on Nikolas.

Ms. Emerson has yet to agree to the therapy and clearly states that her mind is not completely closed on the issue. Although she would rather spare Nikolas the effects and risks of this treatment, if his health begins to deteriorate significantly, she will reconsider and would now, if ordered, comply with treatment. She feels that to remove Nikolas from his home would kill him. This boy has never spent a full night away from his mother’s home, is always in the company of family, and is kept out of public areas as much as possible. An example of this, which logically explains Ms. Emerson’s removal of her sick children from hospital settings as soon as possible against medical advice, is that she and Dr. Benson feel that exposure of Nikolas to places like hospitals where opportunistic infections abound is not healthy for him. The court finds that removal of Nikolas from his home would have a severe and detrimental effect on his well being. Even Dr. Milliken agrees with this. Ms. Emerson’s position regarding Nikolas’s therapy and HIV treatment has been thoroughly discussed with Dr. Benson and is the product of extensive research on the HIV/AIDS treatment issue. This scientific and medical information gathered by Ms. Emerson has been filtered through her own experience with the disease and the drug therapy, her ex-husband’s experience in this regard, the effects seen on Nikolas and, understandably, the failure of similar, then state-of-the-art, medical treatment of her daughter with this disease. She feels that she has willingly and in good faith surrendered up the life of one child to the best treatment medicine has to offer and does not want to do the same with the next. Nikolas has made significant strides recently in gaining weight and overcoming developmental deficits and appears happy and healthy. She does not want to see this child take on the pallor and pain of a sick and dying child. Everyone knows that Nikolas will probably die of his disease someday. No one knows when. Dr. McIntosh best sums up the medical observation of having to suffer a terminal illness by stating that all people suffer from the terminal illness called life.

CONCLUSIONS OF LAW

It is a legitimate and proper role of the State of Maine to be available to step in to protect the welfare of children if their parents are subjecting them to serious abuse. This includes the situation where a parent may be withholding from the child necessary, available, and reasonably effective medical treatment for a life threatening illness or condition. The parent of a child does not have an unfettered right to dictate the level of medical treatment for his or her child if the chosen course places the welfare and well being of the child in jeopardy. If such a parent refuses to comply with necessary treatment, the court has the authority and duty to take whatever steps are minimally necessary to ameliorate that jeopardy, even if it means removing the child from the parent’s custody or control. However, this power should be exercised sparingly and with due consideration of the rights and obligations of a parent to determine the development of and provide safety for a son or daughter. Not all abuse or neglect is intended to be remedied by such interference. Only those situations arising to serious abuse or neglect warrant governmental intrusion.

The initial issue presented in this case is whether the decision of Ms. Emerson to delay drug therapy for her son is rational and reasoned. The court feels that it is. The next issue is whether that decision, despite being the product of a reasoned approach, still places Nikolas’s health or welfare in jeopardy by bringing about or threatening serious harm or depriving him of health care when that deprivation causes a threat of serious harm. A “threat” as intended in this context is “an indication of imminent danger, harm, evil, etcÉ” (Webster’s New World Dictionary of the American Language, Second College Edition).

It is the obligation of the petitioning Department in this matter to prove by a preponderance of the evidence that Ms. Emerson’s deprivation of reasonable and effective health care for her son by now refusing to enter him into HIV/AIDS aggressive drug therapy constitutes an imminent threat of serious harm. The Department has proven that according to the current conventional medical wisdom in the relatively new and rapidly evolving art of treating children with certain elevated levels of HIV in the blood, that Nikolas would benefit from such treatment. However, it has not sufficiently proved what that benefit will likely be and that no significant injury or harm may ultimately befall the child if that therapy is now commenced. The mono therapy, which the best doctors told Ms. Emerson was appropriate for her daughter many months ago failed fatally and is now not recommended by the same experts. Instead, they have recommended a more aggressive and powerful therapy. They may be right in this advice. Current statistics can be interpreted that they may also just as likely be wrong. If so, they will move on to better and more informed attempts to cure this as yet incurable disease, but Ms. Emerson will bury another child. She has placed her faith in this medical approach in the past and has lost a child. She has discontinued her own treatment with no apparent present ill-effects. She has observed an outward improvement in her sick son’s condition with a discontinuance of drug therapy. The State of Maine is now in no position to tell her in the face of her unique experience that she is wrong in her current judgment to wait for better and more reliable treatment methods. In these circumstances and with the relative uncertainty of the efficacy of the proposed treatment, it can only reasonably be left up to the parent to make an informed choice in this regard. This she has done, and if that decision is wrong and exposes Nikolas to jeopardy, it is only because the current body of information available to any mother in her situation is limited or conflicting. The court agrees with Nikolas’s treating family physician that his mother’s decision, while not necessarily the one many parents may make in the same circumstance, does not constitute serious parental neglect.

Accordingly, the petition for child protection order is dismissed.

The Clerk may incorporate this Judgment with findings and conclusions upon the docket by reference.

So ordered.

Dated: September 14, 1998

Douglas A. Clapp JUDGE, MAINE DISTRICT COURT