Voices Across America

Disabled Texan Experiences HIPAA Breach

Jody

State: Texas
Congressional District: TX03

Diseases

Blood Disease, Bone / Muscle Disease, Chronic Pain, Gastrointestinal Disease, Genetic Disease, Immune Disease, Rare Disease, Skin Disease

Issues and Challenges

Jody has encountered: Access to Expert Providers, Access to Medicine, Medicare / Medicaid Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Gaslighting, Medical Discrimination

My Story

In 2020, I was diagnosed with a chronic, progressive debilitative connective tissue disorder and mast cell disease. I am frequently dislocating joints and tearing soft tissue. I also have frequent, severe allergic reactions and hypogammaglobinemia. My allergy list is ever-growing so I must carry an EpiPen. Most of my allergies are to commonly used chemicals and materials used in a medical setting. Throughout my life, I have had numerous life-threatening complications as a result of allergies.

In 2020, I relocated from Georgia to Texas. Since moving, I have been repeatedly denied medical care on the basis of my disability by the only large, public/state-funded University (research) hospital in the state. Most recently, in January 2023, a Hematologist-Oncologist prescribed me a bone marrow biopsy to gain a better understanding of my mast cell disease. In the weeks following the appointment, he placed the order for the procedure to be performed with a known allergen which he listed on my January medical record. When I became aware that the procedure was scheduled, I called and sent urgent messages in the patient portal regarding the allergy. The doctor was unresponsive.

Fortunately, a Nurse transferred my case to the hospital for an accommodation of an alternative anesthetic to avoid an allergic reaction. However, the doctor refused to revise the procedure order for an alternative to be used and cancelled the procedure order. Although I never received the test, a diagnostic result was placed in my medical records and Medicare was billed for tests that were not performed.

Weeks later, I met with a different Hematologist-Oncologist, at the University. She re-prescribed the bone marrow biopsy. When the procedure was not placed nor scheduled in the weeks following the appointment, I requested to know the reason. The doctor responded via a message in the patient portal that the University was “unable to accommodate” my disability.

Two weeks later, a PA who regularly performs the procedure at the University hospital explained the various ways in which the University could have accommodated me if the doctor placed the order. He wrote them down in a medical record for the Specialist to reference. However, I never received the procedure, to date. After I reported the civil rights violation, deprivation of rights under color of law, to the Department of Health and Human Services (HHS) and the Department of Justice (DOJ), the doctor sent me a formal notice of withdrawal of care.

When I reported the emotional trauma triggered by the denials of care and ADA accommodation refusal to my Psychologist at the University, I received a withdrawal of care for mental health services, even though I was an established patient since 2021. Finally, when I reported the violations to a lawyer, I was asked to release my medical records to evaluate my claim. Although I signed the HIPAA authorization and released the records, the University withheld them and sent over 50 pages of unrelated medical history instead. I was not notified of the HIPAA breach nor of the evidence tampering, but discovered them in my legal case file a month later with a witness. Disabled Texans deserve equal care and access to their Medicare benefits.

My Motivation and Inspiration

Advocacy groups that build awareness of these obstacles give me hope!

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