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Anonymous Patient

August 10, 2017

Parity Testimony for U.S. Department of Health and Human Services

(I would like my testimony to be anonymous.)

Thank you for the opportunity to share some of my family’s story of not receiving mental health parity.

My son is 20 years old and has a mental illness diagnosis of schizoaffective disorder, bi-polar type.

After graduation from high school in May of 2016, he moved from our home into on-campus housing and began taking community college courses. A month into independent living, my son had stopped taking both the morning and evening doses of his anti-psychotic medicine.

His thoughts became delusional and he stockpiled food in preparation for an enemy attack. He purchased tobacco seeds with the plan to become a millionaire by selling tobacco to the 10% of the population that would be alive after the attack. He was manic in non-stop pressurized speech, and was up at all hours. When the electricity went out in his apartment, he was convinced it was a terrorist attack against him personally. He stopped showering and going out in the sun believing that the hot water and the heat of the sun felt like ants crawling all over him, or sharp needles.

He grew in hostility toward both his dad and myself, believing that we wanted to kill him and take away his car. He no longer thought he had mental illness. He grew even more hostile against me (his mother) to the point that my son’s psychiatrist said, "He’s demonized you. Have absolutely no contact." A counselor said, "He wants you dead."

At one office appointment during this time period, the psychiatrist asked my son if he would be willing to take a monthly shot of Invegga Sustenna, an anti-psychotic medicine specifically listed to treat schizoaffective disorder. My son said yes.

United Health Care (UHC) insurance denied the submission and said the medicine wasn’t covered under the plan provided through my husband’s workplace (300 employees). The out-of-pocket cost to us would be $2,200.00 per shot. The doctor’s office gave me a "pay $50 coupon". But the use of the coupon was denied by Janssen Pharmaceutical because my UHC plan didn’t cover Invegga Sustenna.

I called Janssen Pharmaceutical. The representative said that’s how it was and there was nothing that she could do to change it. She said if my son didn’t have any insurance, he could apply to a program they offered to the uninsured to receive the medicine free for one year. It is wrong that there is more incentive to be Uninsured and become a financial burden to the State to receive needed medicine to relieve the psychosis from severe mental illness, than to have insurance.

Meanwhile, my son’s psychiatrist completed and sent in the "next step" Prior Authorization Form required. It was denied: "Exclusion. Not covered under plan." Then the doctor sent a Letter of Appeal to UHC and gave me a copy. By this time it was the end of December 2016, and my husband’s employer was changing insurance companies starting January 1, 2017. I had hoped the Appeal would be approved quickly and set a precedent if there were problems getting Invega Sustenna approved for my son by Aetna, our new insurance company. It was not.

[Note: Months later I called UHC to see what had happened to the Appeal of December 2016. It was a typical frustrating insurance company call that beats you down and feels designed to make you give up. I’ve experienced several of those over the years of trying to get mental care help for my son. The first twenty minutes was spent being transferred and asking for help from three people in "wrong" departments. They all said there was nothing recorded in the file. No record of the denials and no record of my December 15th one-hour telephone call in which I spoke to five people in five departments telling stories of my son’s escalation and my fear for our safety.

I requested a supervisor. Finally, the supervisor acknowledged that the Prior Authorization Form had been submitted and denied, but said that there was no mention of an Appeal. I told her I had a copy of the Appeal Letter that the doctor sent to UHC. The supervisor transferred me to the Appeals Department. I was again told me there was no record of any Appeal. I had to ask the representative three times, "What are the steps to appeal?" and insist that she tell me. One step only: The doctor or patient writes a letter and sends or faxes it to UHC.]

When my son’s behavior escalated in hostility to the point we feared for our safety, we contacted a CIT officer for advice, and had a Crisis Center team check on him. At this time we were paying for my son to live in an extended hotel so that he would not be homeless on the streets. We had people suggest to us that we should allow him to be homeless. For some, the suggestion was made because they felt that "tough love" was needed (would anyone suggest that a person with cancer or heart disease be shown "tough love"?) For others, the proposal of homelessness was suggested so that my son would qualify to receive housing for the homeless (which was limited). I was also advised by people to take my son off of our family insurance so that he would be covered by the State and receive services. Also, I was advised to take my son off our insurance because if he were to be admitted to an out-of-network in-patient treatment center, such as the one the Community Health Center runs, the out-of-pocket cost to us would be extremely high.

My son’s doctor completed paperwork to get my son under review to receive assistance from one of the federal help programs for the seriously mentally ill that are offered through a local Community Health Center. My son was admitted to one of the programs and was assigned a case manager and peer recovery support person. He received psychiatric evaluation at the Community Health Center that has been in business since the 1980s. Here is another example of lack of mental health parity even among insurance companies: Aetna (our 2017 insurance provider) does not designate the Community Health Center as in-network, and would not pay any of the cost of my son seeing a psychiatrist. UHC, our previous provider , does recognize the Community Health Center as in-network. Because my son was estranged from the family, the Community Health Center did not ask us to pay the costs that Aetna denied, for which I am thankful. Is the cost picked up by the State through the funding the State gives the Community Health Center? If so, it’s another example of lack of mental health parity with the State carrying the financial burden.

Thank you for your efforts and dedication to make the world of the mentally ill and their families one of mental health parity.

Additional email comment:

I just realized I forgot to say that Aetna, our 2017 insurance provider denied the coverage of Invegga Sustenna for my son as well. We did not get into an appeal given the dire circumstances at the time and the estrangement of my son from our family and his receiving help from the Community Health Center and the federal program for the time being. It is still a goal to someday have insurance cover the monthly injection.

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Content last reviewed on October 17, 2017