Colorado Department of Public Health and Environment Mines the New Oil: Health Data

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Colorado's Department of Colorado Department of Public Health and Environment is seeking to circumvent the legislature and the law in an attempt to collect the personally Identifiable Information of children—and their families—seeking vaccine exemptions. 

Over the past several years the Colorado Department of Public Health and Environment (CDPHE) has acted without authority to attempt a mandate of the use of state vaccine exemption forms and submission of student Personally Identifiable Information (PII) into a State database and tracking system through misinformation given to schools and through rule change, outside of legislation. Parents and organizations have had to push back year after year and now the attempt is being made again.

This year an Executive Order (EO) by Governor Polis issued this summer is being used to justify a rule change that would require the use of a State form for vaccine exemptions. The EO did not give the authority to mandate the use of a state form that loads PII, including address, into a state registry like sex offenders. Only legislation can do this and the legislation that attempted to require a State form failed again this year. The EO requested CDPHE to “propose to the State Board of Health an increased use of standardized, easy-to-print medical and non-medical exemption forms.” It did not give the authority to mandate a form.

When in 2016 HB1164, which was a previous attempt at mandating a State form did not pass, CDPHE promoted the forms as required. The form was created before the legislation even ran, bypassing stakeholder input, and it contained compelled speech issues. Parents and organizations pushed back. The 2016 debacle eventually ended with CDE and CDPHE issuing a joint statement of retraction and CDE sending a letter of clarification on immunization rights to all Superintendents. The law regarding exemptions is very clear. Parents rights are stated in C.R.S. 25-4-903 B, “By submitting to the student’s school a statement of exemption signed by one parent or guardian or the emancipated student or student eighteen years of age or older that the parent, guardian, or student is an adherent to a religious belief whose teachings are opposed to immunizations or that the parent or guardian or the emancipated student or student eighteen years of age or older has a personal belief that is opposed to immunizations.”
The real question is why is CDPHE is so desperate to implement their State forms. It appears that CDPHE is in the business of harassing and tracking anyone who dares to question the ever-expanding vaccine schedule by taking an exemption from even one vaccine such as Hepatitis B which is not even communicable in a school setting. Yet children with active HIV or hepatitis C are allowed to go to school, un-harassed and un-tracked, and this is how it should be, private medical information should be just that – private.

Schools are not required to supply aggregate data on ill children at school but, schools are required to report aggregate data on healthy children exempting from vaccines. And even though this aggregate data is available to everyone, CDPHE attempts, year after year to find a way to get those children’s PII into a State database. CDPHE has never once offered any information about how this desired data will be used, with whom it will be shared or to whom it may be sold. They have never supplied a privacy policy or given any information about how long this data will be held in their possession or the possession of whomever they share and sell it to. If parents are forced to enter their children’s PII into this State database they will be doing so without any sort of data use policy or transparency from the State. Is a database with a PII for tracking the most prevalent infectious diseases like STDs in adults next?

Conversely, if student PII from a K-12 school is collected in a State database or by contracted vendors, the State or contracted vendor must be transparent about data elements and their use according to HB16-1423. Additionally, the Family Educational Rights and Privacy Act (FERPA) requires written parental consent before any information on the student record is shared outside of the school. When parents submit exemptions to the school, the information is protected by this federal law. CDPHE is trying to circumvent both Federal and State laws by their rule change attempt and misinformation to schools.

How the information would be used is anyone’s guess. One possibility is that it may be sold to or shared with pharmaceutical companies so that they may promote their liability-free vaccines to anyone who has declined them in the past. There were at least two instances where immunization information was used to promote vaccines in states with Immunization Information Systems (IIS), our system in Colorado is called CIIS. These occurrences happened in Indiana and Michigan. Many parents in these states were unaware that their children’s PII was even in such a database. These parents were directed to take their children in for vaccination for vaccines not even on the required school schedule but were not told that the vaccines were not required. https://hslda.org/content/hs/state/mi/20151110.asp What other uses would this data provide and why is this data set so compelling?

CDPHE will tell you that the PII of exempting children is needed to protect them in an outbreak of disease. There are two things wrong with this answer. First, the schools already have this information and it is the schools that are in the closest and most immediate contact with a student who may need to stay home during an outbreak. All children taking a vaccine exemption must stay home during an outbreak and parents taking these exemptions to know this. Second, vaccines are not 100% effective. Just because you have been vaccinated for a particular disease it does not mean that you are protected, so saying that the only vulnerable children are the unvaccinated is just plain wrong. Take the flu shot, many years it is less than 40% effective. Another example of less than stellar results is the pertussis component of the DTaP. According to the CDC it only protects 7 in 10 children five years after getting the last dose and in the Tdap it protects only about 3 or 4 in 10 people four years after getting it.

Views on vaccination and phishing for children’s data aside, our governmental agencies should not be trying to circumvent the law. They should be building public trust, not eroding it.

Featured Author

Heather Lahdenpera

Heather Lahdenpera

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