ANH-Intl has been campaigning for freedom of choice in healthcare for over 12 years now. It’s one of our most fundamental campaigns. The recent case of a Canadian court granting an Aboriginal child, and others like her, the right to refuse chemotherapy in favour of traditional healing is a massive step forward for health freedom.

However, for every giant leap forwards, there still seems to be an opposite and reverse reaction. In this article, we start to prise the lid off a fairly taboo subject area. We’ve brought you news in the past of individual cases where parental rights are being totally eroded, but there appears to be a rising trend in further incidences. Particularly in the US, parental rights are being removed by conventional healthcare authorities in order to ensure sick children receive a particular medical treatment, when that treatment has been opposed by the child’s parents. We asked two US organisations — the Parental Rights Foundation (PRF) and Medical Kidnap (MK) who do important work for families in distress to comment further.

Where rights to choose are respected

Aboriginal groups in Canada campaigned hard to have their rights included in Section 35 of Canada’s Constitution Act, when it was redrafted in the 1980s. The Act now “recognizes and affirms” those rights and, thanks to Ontario Court Justice Gethin Edward’s recent decision that “there is no question it forms an integral part”, these rights now include traditional healing. His judgement concluded “that (the mother’s) decision to pursue traditional medicine for her daughter is her aboriginal right. Further, such a right cannot be qualified as a right only if it is proven to work by employing the western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights”.

Were other parents and children accorded similar rights to make healthcare choices in the West, many would welcome it.

…and where rights to choose are removed

Instead, there seems to be an increasing trend to legally oblige parents to go along with particular treatments for their children, and to remove parental rights if the treatments are questioned, or second opinions sought. This is happening in the UK, where cases receive much media attention, as well as (on a larger scale) in the USA. In the Justina Pelletier case, highlighted by ANH-USA, the parents were accused of medical abuse.

Medical Kidnap explained that the term ‘medical kidnap’ is used in the US in circumstances where, on the basis of a sole complaint to a social services agency by a doctor, a judge removes a child from the parents "using the Contrary to Welfare order as defined by the Department of Health and Human Services and based on the Social Security Act".

Plenty such cases can be found on the webpages of US organisations such as Medical Kidnap (part of Health Impact News) and Parental Rights Foundation — linked with Cases like that of baby Sammy Nicolayev and 8-year-old Jaxon Adams. Medical Kidnap admits to being “overwhelmed with the needs of families” requiring their assistance.

Is there a link to genetic research studies?

Questions are being posed around whether US children made wards of the State in this way may be being used in genetic research studies. Medical Kidnap’s report on the cases at the Phoenix Children’s Hospital states, “behind each of these stories is a link to experimental drug trials for the same medical conditions these children were suffering”. The Blaze highlights that the Clinical Investigation Policy and Procedure Manual of the Boston Children's Hospital, where the Justina Pelletier case occurred, opens by setting out the circumstances in which "Children who are Wards of the state may be included in research…". Other medical institutions are said to have similar policies.

Medical Kidnap say that the Phoenix Children’s Hospital cases have “prompted a group of lawmakers on Capitol Hill to introduce new legislation to stop this kind of medical experimentation on children who are seized from parents and made wards of the state”.

ANH-Intl asked Michael Ramey, Director of Communications & Research, Parental Rights Foundation and Brian Shilhavy, Managing Editor and founder of Health Impact News (of which Medical Kidnap is a subsection) for their comment:

1. Are incidences definitely increasing, where parental rights over sick children are being removed?

PRF: Cases are often sealed because they involve juveniles, so it is hard to get an accurate picture. But we are looking into this because, anecdotally, that would seem to be the case.

MK: We think it is just coming out into the public more…. The alleged abuse of parental rights has been documented in books for more than 20 years now, at least.

2. What do you see as the reasons behind the potential increase in incidences?

PRF: the rights of parents are not clearly defined, understood, and respected in a large number of medical settings, whether in America or around the world.

MK: Federal funding for Medicaid and foster care. 

3. Is there anything that can be done to counter this trend?

PRF: In the vast majority of cases the parents are the good guys; they want what is best for their child. States and nations can pass laws that respect the legal role that parents play as caretakers of their child’s rights.

Lawmakers need to be made aware of these cases so that they can study the problem and create solutions that protect children by strengthening the natural defense mechanism that is the family.

MK: Abolish all federal funding for CPS and Foster Care. Repeal certain sections or amend the Social Security Act that allows unelected judges to arbitrarily remove children from parents on mere suspicion or a doctor's order, and then force the parents to fight it out in court to get their children back. Only those wealthy enough to afford a good attorney ever do. U.S. Constitutional rights of parents are being violated by judges using the Social Security Act to obtain federal funding.

4. Are any/many of the cases resolved through legal processes, etc?

PRF: Certainly some are. It is hard to say because so many cases are handled in the family courts, where records are sealed for privacy.

MK: Only if the parents are wealthy enough to hire a good attorney, or a national organization takes up the case, such as happened with Justina Pelletier. But there are many thousands of cases just like Justina Pelletier.

5. What tends to be the outcome for children who have been taken away from their families in this way and given the treatments the state deemed fit?

PRF: We don’t have enough evidence yet to clearly define the trends, but the high-profile case of Justina Pelletier might serve as an example of what we do see.

Justina was diagnosed by a team at Tufts Medical Center with mitochondrial disease, but when she found herself in the ER at Boston Children’s Hospital (BCH), they threw out that diagnosis and replaced it with one of somatoform disorder: they decided her sickness was all in her head.

When Justina’s parents followed the Tufts diagnosis and tried to remove her from BCH, the state stepped in and took custody, keeping her in the care of Boston Children’s.

The parents eventually got their daughter returned, but it is hard to understand why the state stepped in here in the first place. The parents were not refusing treatment; they simply preferred to follow one hospital's recommendations rather than another's. Why would anyone think the state, and not the parents, should be in charge of deciding which hospital plan to follow?

…. news reports tell us the outcome was physically devastating. Justina's medical care, as prescribed by Tufts, was neglected for 15 months.

MK: Current U.S. law allows doctors to conduct medical trials on children who are wards of the state. This is very convenient for doctors and hospitals as they do not need parental or insurance approval, since all medical bills are picked up by Medicaid.

Standing up for freedom of choice in healthcare

Aboriginal rights in Canada were won as a result of campaigning, protests and petitioning the court. The case of Ashya King was resolved as a result of public pressure placed on the UK government. In South Africa, protesters are demanding an end to ”Medical Apartheid” — the denial of their right to practice traditional medicine.

Transgressions of our inalienable rights and freedoms, not just in the health arena, are happening all around us. It is time to stand up for our freedoms, and for those incapable of doing it themselves, wherever we are in the world. Parental rights are, in our view, a bastion that should not be breached, unless there is extensive and sufficient due cause. The comments above, from two US organisations ‘on the ground’, are like the canaries in the mine shafts. Can we afford to ignore the early warning of what may become common practice?