By Anne Dachel
On Jan 31, 2013, MagicValley.com from Twin Falls, ID, published the story, Proposed Immunization Database Change Prompts Privacy Concerns.
The article was about proposed changes to the state’s immunization database and controversy over medical records and individual rights that had been ignited. We were told about an Idaho Senate Health and Welfare Committee hearing that had been held the previous day, Jan 30. Leslie Manookian, the co-creator of the award-winning film, The Greater Good, a documentary about vaccine safety.
Leslie is a resident of Idaho and she attended the state hearing to voice her opinion on vaccine surveillance. I interviewed Leslie about what happened.
From the story on MagicValley.com:
“Currently, Idaho’s Immunization Reminder Information System, or IRIS, tracks immunization information of anyone who receives an immunization in the state. The system is voluntary, though it automatically records patient information and immunization records unless they or their parents choose to opt-out.”
Anne: Leslie, the Times-News reported that immunizations are currently being tracked in Idaho. How many people are aware that this registry is being kept? Is there a requirement that those receiving immunizations be told about this surveillance?
Leslie: It is Idaho State law that all vaccine providers inform patients that vaccines are not mandatory in Idaho to attend school or be employed, that vaccines carry known risks and what they are, that the vaccine registry IRIS exists, and that people may opt out of the system. Sadly, and illegally, many patients are not informed of all these facts. I have asked a half dozen friends with children over the past few days about the vaccine registry and not one of them had heard of it. In addition, at the hearing last Wednesday, the Idaho Dept. of Health and Welfare (IDHW) representative, Dr. Hahn explained that not only are children being added to this registry but so are adults. She mentioned this fact when she discussed that adults who received the swine flu vaccine a couple of years ago were entered into the registry. What she did not explain was whether these people were informed of the registry and whether they gave their consent to being included in the registry. What's more, there exists no provision in Idaho law for the IDHW to track vaccination information on adults so the legality of this is clearly in question. From parents I know in our community, I have heard stories about how doctors have made reassurances such as: "I guarantee you 100% that nothing is going to happen to your child" which is not only unethical but dishonest. So while it is Idaho law to inform parents and adults, it does appear that it is not happening. It is also important to note that there is no regulatory body ensuring that the law is being followed and no fines for non-compliance.
“The proposal, presented by Dr. Christine Hahn of the Department of Health and Welfare, would allow the registry to retain the name and date of birth of those who opt out to make sure medical professionals don’t accidentally enter information of those who don’t want their information in the database.”
Anne: What will the two new bills do to alter the existing system?
Leslie: The two new bills do two things. Firstly, SB 1012 would establish a vaccine registry for all Idahoans from cradle to grave. Given that vaccine information is already being kept on adults without any legal provision for it suggests SB 1012 has been introduced to not only provide legal cover for IDHW's previous actions but also to enable tracking of vaccine uptake of the entire population. The bill that pertains to children, SB 1011, would make it possible to remove a child's vaccination records, but not a child's name and date of birth from the registry meaning IDHW would have a permanent list of those who do and don't vaccinate. In addition, although IDHW says they do not have the ability to sort the information to list non-vaccinators, non-vaccinators receive a check mark next to their name and using this information to sort the database in just a mouse click away.
“The idea, Hahn said, is to protect those who opt out from having their information disclosed against their will.”
Anne: Leslie, Dr. Hahn makes it seem as though vaccination information currently held by the state is at risk of being disclosed. This all seems very confusing. What is the Dept of Health and Welfare trying to do here?
Leslie: IDHW's stated purpose of SB 1012 is to create a registry to track vaccine usage. So they want to know who is complying with Federal vaccine schedules and who is not. Regarding SB 1011, they say they are trying to prevent information from being entered into the system by mistake if someone has opted out. They therefore say that they want to retain the name and date of birth, tag this person as an opt out, then reject future information if another doctor tries to enter vaccine information. Of course, if that doctor followed the law and informed the patient that the registry exists and that they have the right to opt out, the patient could say they have opted out and there would be no need to "protect" folks against this kind of accident.
The concern here is two-fold. Firstly, it is a stated objective of the Federal government to create a database of vaccine use which would include 95% of all children under 6 years of age. There was a CDC report released January 25th titled "Progress in Immunization Information Systems" which discusses how the Federal Immunization Information Systems gather information from the States about immunization records in order to “provide important tools for designing and sustaining effective immunization strategies”. States are “grantees” of the program which begs the questions, is the Federal government behind these bills, exactly what information are the States giving the Federal government, and what are the States receiving in exchange for this information? It is also worth noting that Federal public health policy makers, vaccine makers, and vaccine proponents have openly expressed their desire to reduce or remove exemptions to vaccines which casts this proposed legislation in an even more worrying light. The other point of concern regarding this legislation is potential for abuse. In States across the nation, American parents have been charged with medical neglect and had their children removed by Child Protective Services for choosing not to vaccinate. These are highly educated parents who have chosen what they feel is the best route to health for their families and they have to endure pressure, threats, coercion and having their children removed in some instances for exercising their right to pursue health in the manner they see fit. In other cases, children have been summoned to a school nurse's offices and been vaccinated against written parental wishes. Unfortunately, these cases of information abuse are not infrequent.
Anne: Leslie, you made public comment at the hearing on Jan 30. How would you describe what was said by those in attendance?
Leslie: When I appeared at the hearing last week, the room was packed. I had driven over 3 hours to be there and there were others there to testify who had driven 8 hours! The only people who spoke in favor of the bills were Dr. Hahn from the IDHW, a pediatrician named Dr. Patterson who said he was the Idaho head of the American Academy of Pediatrics and the Idaho Immunization Action Coalition, and another doctor who I believe was also connected to the IDHW. All the public testimony including one doctor who is also the mother of a child who nearly died after vaccinations, were opposed to the bills. Wayne Hoffman, the executive director of the Idaho Freedom Foundation also testified in opposition citing unnecessary government intrusion into our private lives. Some of the Committee members also mentioned that they had received about a hundred emails opposing the bills.
Anne: What are the ramifications of legislation like this? What can parents do when similar bills are proposed in other states?
Leslie: The ramifications of bills such as this are immense. Once the State and or Federal government have information on vaccination status, they are able to target, harass, pressure, and coerce those who choose a different approach than what Federal health officials advise. Federal law already provides for Americans to be forcibly vaccinated against their will in the event a flu pandemic is declared so we must thoroughly assess the potential danger posed by these registries. In addition, health care workers across the nation are being fired for refusing flu shots despite the science showing that at best flu shots only work one third of the time in healthy adults and that they carry genuine and severe risks such as death and paralysis. We also have to contemplate what is next if government gains access to this information. Will the government decide it is OK to track what we eat, whether we drink soda, whether we take vitamins, how much we sleep? Will the government decide to track how much alcohol we drink or whether we smoke? These are all factors that relate to our health and wellbeing so where does it stop? Will people who choose not to vaccinate be barred from future employment, will they be barred from entering museums, boarding airplanes? The implications are immense and deeply worrying. It is vitally important that anyone who cares about these issues signs up with the NVICadvocacy.org to receive notifications about what is going on in their state so that they can get involved. It is quite clear that the public outpouring of opposition was a key factor in keeping these bills in committee, at least for the time being. But this issue is not over in Idaho, the bills could still be brought up and the work to educate and empower folks about the risks of vaccinations as well as their freedoms, goes on.
Anne Dachel is Media Editor for Age of Autism.