It Happened to Me: A HIPAA Violation

Sharing health information with any healthcare professional should be protected by HIPAA. When I found out someone violated this protection, I had to speak up.

Leaning on the counter while I stirred sauce over the flaming stove, I forced my eyes to stay open. I dragged the lid out of the cabinet, secured it to the pot, and lowered the heat.

Pins and needles crept down my thighs into my feet like warm concrete slowly slipping through my veins. I just needed a short nap on the couch. Then I’d be OK.

No sooner had my legs hit the ottoman when I heard, “Mommy my zipper is stuck!” My 8-year-old zoomed into the room and flopped onto my lap with her curly hair flying and her parka hanging lopsided with a crooked zipper.

I wrangled the jacket over her head and began delicately working on freeing the zipper with my painful arthritic fingers.

Then my 14-year-old appeared needing homework help. I asked her to check on the sauce. “Mom, it’s burned and stuck to the pot!”

I jumped up to assess the damage, tossing my little one aside. My son called from the other room, asking if his uniform was clean for the game that night.

Why did everything hurt so much? I had rheumatoid arthritis (RA) and fibromyalgia, but it was manageable. When did I become so exhausted? When did I become so useless? Huge tears ran down my cheeks. I retreated into the bathroom, not wanting my children to see me cry, yet again.

That night, I called for pizza delivery, and everyone was happy. The pot was burned so badly I didn’t have the energy or the strength to clean it. I threw the pot away.

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My mom gifted me in-home care

My mom knew my health was failing and gifted me some in-home care. The helpers came every 2 weeks and did small housekeeping tasks around the house.

Although I was grateful for the assistance, most of the helpers were older than me, and I felt incredibly guilty having them work for me.

My autonomy was being stripped by my RA and fibromyalgia, creating an enormous sense of loss. Having to rely on others to complete basic household tasks made my anxiety soar.

I sought comfort in HIPAA protections.

HIPAA stands for the Health Insurance Portability and Accountability Act of 1996. The Centers for Disease Control and Prevention (CDC) explains that HIPAA is a federal law that protects sensitive patient health information from being disclosed without the patient’s consent or knowledge.

HIPAA applies to the majority of healthcare professionals who have access to your personally identifiable health information, including home healthcare workers who are trained at larger companies and entities.

This protection brought me a sense of safety. At least no one would know I was receiving care for invisible chronic illnesses. Most people didn’t even know I was ill. I kept my chronic illnesses a secret, and I wanted it to remain that way — at least until I was ready to share this information.

Discovering transgressions

When my daughter was in high school, a girl she barely knew yelled down a corridor, “I didn’t know your mom had RA!”

Not only was my daughter humiliated on behalf of herself and me, but that outing exposed my autoimmune conditions to anyone listening and jeopardized my ability to substitute teach in the school. I was furious upon learning about this violation of my privacy.

Strangers working in my home knew the most vulnerable details of my life. They had access to my children and listened to our conversations. I didn’t even know which employee committed the transgression. The betrayal felt like I’d been cut, physically wounded. Once again, I found myself crying.

It’s difficult to be a chronically ill mother, and I try my hardest to keep my kids’ lives “normal.” But they have feelings about my illness. And they certainly don’t want the fact that I have RA broadcast over the school hallway.

Deciding to speak up

I contacted the in-home care service only to be told that the employee in question, the mother of the girl, “would never violate anyone’s privacy.” I was forced to battle with the owner, just to prove the transgression actually happened. It was grueling and triggered an enormous flare-up where I was bedridden with lassitude.

I second-guessed myself. Was I doing the right thing in reporting? There wasn’t ill intent when the worker discussed my case with her family. The people pleaser in me worried I was causing unnecessary stress to the worker. Was I making too big a deal out of this?

Speaking to friends helped me change my mindset and speak up for myself.

The worker signed a nondisclosure agreement. Bad intent had nothing to do with it. She wasn’t supposed to talk about my case with anybody. End of conversation. And here I was worried about her losing her job after she breached her contract and did damage to my family and to me.

Eventually, the owner spoke with the employee at fault, told me she wasn’t going to fire her employee, and swore the incident would never happen again. Not happen again?! Once was enough to cause me and my family harm. Once was unlawful.

The chronically ill can become prey to violations

In the end, I didn’t have the energy to fight the matter at a higher level. The chronically ill become prey for such violations because we are often too sick and too exhausted to get appropriate resolutions.

We are still humans with dignity, and I just couldn’t accept a double loss. I negotiated 6 months of free services with a helper I trusted in exchange for the HIPAA violation. That outcome was actually useful to me, and I was happy with it. However, I never felt at peace in my home again with a helper present.

I certainly became more vigilant to protect myself from this happening again. When my kids needed to talk to me about issues, I ushered them into a different room so the helper wouldn’t overhear our private conversations.

I no longer shared my illness with helpers. They only knew that I needed help but didn’t know why. I learned that although HIPAA laws exist to protect a patient’s privacy, the patient also has a role in divulging unnecessary information to any home healthcare worker.

This has made things more complex, and I’m sad that I can’t feel completely at ease. I’ve learned that HIPAA compliance is not as straightforward for home healthcare as it is for other healthcare services at specific locations. When in-home care professionals are also part of your community, it can be a difficult path to navigate.

Letting someone into your home — to put it simply — is so much closer to home, and any HIPAA violation can feel even more personal.

The takeaway

It’s important to know your rights and feel protected. HIPAA is designed to safeguard your personal health information. If you feel like your information has ever been compromised, you can file a complaint here.

While HIPAA is wonderful, and I’m grateful for the protection, it can become more challenging with in-home care when a professional is part of your community, and you might have friends in common, or your kids go to the same school.

There are times when living with chronic illnesses can make a violation cut even deeper as I don’t always have the resources to continue fighting for resolutions. I felt too sick to take the matter further, but I’m glad I spoke up. I’m very thankful to those friends who encouraged me to do so.