PCIC started watching SB709 in January of 2022 due to concerns about infringement on medical freedom. 

The bill originally stated:

“the department shall require a birthing facility…to screen the newborn child for CMV before the newborn child is 21 days of age if: (1) the newborn child fails the initial newborn hearing screening…” 

There was the option for parents to opt out. Yet, it was not specified that the opt-out would need to be communicated to parents. The reality is that many times, completely exhausted new parents are coerced into accepting medical procedures, testing, or interventions without being informed that they can opt out, or understanding the implications of the procedures. Too often, parents do not receive full informed consent. We realized that due to the wording of the bill, that this testing could be forced on parents. Facilities would see that it is “required” for them to screen newborns who fail the newborn hearing screening, and would likely tell parents that they MUST accept the testing. This is antithetical to our mission of informed consent.

So, what is CMV, anyway?

• CMV stands for cytomegalovirus. According to the CDC, “most people have been infected with cytomegalovirus (CMV), but do not have symptoms.” (1)
• One out of 200 babies is born with CMV infection, and 4 out of 5 will not experience long-term health problems. (2)
• The treatment for CMV is antiviral medications (i.e. valganciclovir), which can have serious side effects. The CDC states “there is limited information on the effectiveness of valganciclovir to treat babies with hearing loss alone”. (2)
• Notably, the CDC recommends that babies should receive PCR testing “to detect live virus”. (2) Yet, PCR testing is seeking the presence of specific DNA particles and does not prove that there is an active infection. (3)
• Additionally, on their fact sheets, the CDC does not describe any risk factors or reasons why a minority of babies may experience health effects from CMV, while the majority does not.

Through working with legislators who are willing to stand up for health freedom, we were able to get this bill amended so that CMV testing is optional. Representative Hershey wrote an amendment which successfully got added to the bill, stating that CMV testing will be offered to parents, and that written permission from parent/guardian is required. This bill was passed by the Senate and the House, and Governor Wolf signed it into law on June 27, 2022.

We’re grateful for this win for medical freedom. Everyone should have adequate information on benefits and risks of medical interventions, and be able to choose freely without coercion. Sometimes, medical freedom advocacy is hard – we don’t always get to see the effects of our work. But, there are good legislators who are willing to work with us for legislation that will protect the rights of parents and individuals to make the right health decisions for themselves.

1 https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

2 https://www.cdc.gov/cmv/fact-sheets/healthcare-providers.html

3 https://www.cebm.net/covid-19/infectious-positive-pcr-test-result-covid-19/