A state bill endangers trust in our public health system
Across Pennsylvania, public health workers and advocates continue to work tirelessly to earn trust while keeping the commonwealth safe — a daily challenge clearly seen with the COVID-19 pandemic.
House Bill 1893, currently before the Pennsylvania state Senate, deeply endangers this trust, though it may not seem to do so on the surface.
In an email to the Pennsylvania Newsmedia Association, the Wolf administration wrote, “In its current form, [HB 1893] allows for the public release of personally identifiable medical records and would make public every report of disease.”
Government transparency is usually valu- able and encouraged, but if you read between the lines, the impact of HB 1893 would devastate and demolish any remaining trust in our public health system by making private health results of disease investigations subject to the state’s Right-to-Know Law.
Let’s be clear: Protecting trust in our public health system is a necessary exemption to this law, and the state Senate should not support this deceptive legislation.
Consider the traumatic impact this bill would have on marginalized communities and on people with communicable diseases such as HIV/ AIDS and hepatitis B.
Publicizing details, including diagnoses and partner notifications, will further harm and stigmatize these individuals, making it harder to get them to participate in testing and care. Potentially “outing” a person with HIV disparately impacts LGBTQ+, BIPOC and low-income communities.
The stigma and discrimination tied to being diagnosed with diseases such as HIV, syphilis and hepatitis B already present an uncomfortable tradeoff when it comes to partner notification. Pennsylvanians who comply with that process are willing to give up some privacy — in order to keep other people healthy and alive.
For the LGBTQ+ community, trusting the public health system is necessary yet a considerable challenge.
The 2020 Pennsylvania LGBTQ Health Needs Assessment found that 25% of LGBTQ+ Pennsylvanians have not shared their sexual orientation or gender identity with any of their health care providers. Another 23% said they
experienced a negative reaction from a health care provider after disclosing their LGBTQ+ identity.
The reaction from health care providers may explain why one out of every three LGBTQ+ Pennsylvanians has never gotten tested for HIV, according to the assessment.
People who test HIV positive should always trust that their status and medical information is protected, unless they choose to disclose that. People diagnosed with HIV require access to proper treatment and care, not stigma and judgment enabled by legislation.
Stigma associated with communicable diseases such as HIV is present
and difficult for some to overcome. As a public health professional and advocate for a high quality of health for all, I say it’s imperative to encourage people to get tested.
Right now, the state’s public health system includes a structure of disease investigations, which happen when someone tests positive for a communicable disease at a clinic or is diagnosed by a physician. Pennsylvania law mandates reporting this health information to public health officials.
The purpose is to collect personal health information, so that the public can reference accurate data about the spread of a disease and develop strategies
through evidence-based measures.
Disease investigations would not be possible without confidentiality, and this system protects personal health information and the public’s health.
Advocates and legislators for this bill claim that patient privacy measures such as HIPAA would continue to protect Pennsylvanians. However, this bill would threaten these protections through Right to Know requests for communicable diseases such as HIV.
It will lead to fewer partner notifications, creating mistrust and more harm.
Those in the public health sector are saving countless lives every day, working day and night with state and local governments to stop the spread and reduce the risk of communicable diseases and other outbreaks just like the COVID-19 pandemic. But they can’t do that if people don’t trust them to protect their privacy.
HB 1893 may be well intentioned, but it will do more harm than good. Public health must protect the safety and wellness of all people, and this bill would do the exact opposite.