Reproductive rights are under attack — we must protect our medical privacy at all costs

Last year, I got pregnant with twins. It's hard to write that, because twins implies two babies, and I have none.

After struggling for years with fertility, I became pregnant through in vitro fertilization (IVF). Unlike the experiences of many couples on social media, my husband and I were never overly excited. We maintained what can be described only as a slightly anxious and stressful optimism. We told very few people. My mother-in-law made a pilgrimage to a temple in India. My mother, sister and I prayed. We knew we faced incredible odds, so each positive ultrasound was a quiet victory.

During one of my ultrasounds, we discovered one embryo had a heartbeat and the other did not. The doctor told my husband and me that we would need to come back in 10 days for a fetal viability assessment. When we returned, neither embryo had a heartbeat. I made it to the lobby before bursting into tears.

Later, I had a follow-up conversation with my doctor about our options. Because it was a twin pregnancy, my doctor recommended dilation and curettage (“D and C”), a common procedure better known as an abortion, to treat my miscarriage. Three days later, I was no longer pregnant. Call it what you want — a miscarriage or an abortion — to some, there is no difference.

You will notice at no point did I state the dates I received care, a gestational age, or other identifying information about my health care. I don’t have to. Not only that, my doctor doesn’t have to either. Because when it’s in my doctor’s possession, it’s protected under federal law by the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

I live in a state where abortion is legal. At no point was I concerned that my medical information would be used to investigate, prosecute or track me, my health care records or my doctor. At no point did my doctor have to give me medically inaccurate information, call her lawyer before talking to me or filter what she said to avoid her own prosecution. But since the fall of Roe v. Wade, the Supreme Court decision guaranteeing a federal right to abortion, my experience has become all too uncommon.

In my current job, I have spoken with patients and doctors in 14 states that have banned abortion. In many of these clinics, there is bulletproof glass. Two had experienced arson. At another, I was escorted from my car to the door for my safety. Doctors told me they fear the possible consequences of providing legal health care. They worry about speaking freely with their patients. One doctor told me she tells her high-risk patients to leave the state for their safety and to ensure they get the best care throughout their pregnancy. But leaving is risky, because since the end of Roe, there are people who want to use private medical information to track the legal health care you receive, no matter where you get it.

Yep, you read that right. Right now, somewhere in the country, a woman is leaving her home state where abortion is banned, like my home state of Arizona, to receive lawful abortion care in another state. Law enforcement in her home state may be gearing up to seek out her protected health information from that out-of-state clinic where she is receiving lawful health care. They may then target her when she goes home, or go after her home state doctor, a doctor who had nothing to do with the care.

Thankfully, the Biden-Harris administration announced a rule that will ban the use of your data in this way, protecting your private medical data from an unfounded fishing expedition. Specifically, it prohibits the use and disclosure of your protected health information to investigate or impose liability on you and your providers for obtaining or providing lawful reproductive care. This means that no matter where you live in this country, your state doesn’t control you or your medical data. This rule takes a giant step in protecting it.

Whether you are like me and experienced a miscarriage or must travel for lawful reproductive health care, the last thing you should have to worry about is your privacy. You should feel secure in the knowledge that your health information is protected and be able to trust the conversations you have with your medical provider. 

While I was undergoing my abortion, I couldn’t help but cry. Cry for the loss of my pregnancies. Cry for the women who do not have the same privilege as I do or who go unseen and unheard in their communities. Their health care is now discounted by their gender and ability to get pregnant.

You deserve to feel confident discussing these choices with your doctor, free from the threat of criminal, civil or administrative investigation or liability. The HIPAA Privacy Rule to Support Reproductive Health Care Privacy helps protect this right for you.

Melanie Fontes Rainer serves as director of the Office for Civil Rights at the U.S. Department of Health and Human Services.