Finding Insurance Coverage During Difficult Times:
How One Patient Tapped into Community Resources
By: Hada Monahan
The Good PH Life: On the Right Path
My journey with PH began in November 2005. I had just turned 27 and was trying to start a new life with my husband as a newlywed. I was working full time as a case manager for children with special needs. It was a blessing that my employer paid 100 percent of my insurance premium. I still had to pay a $1,000 deductible, but with a diagnosis of PH, that deductible was met almost immediately! Life with PH was good. I had a supportive family and co-workers, great insurance benefits and a rewarding career — what could possibly go wrong?
Some Roadblocks and Detours
However, this house of cards tumbled down. On May 20, 2010, (a day I will never forget), I went into work with tears in my eyes. My PH had progressed, and it was very difficult to work a 35-hour week. I had a doctor’s note in my hand stating I was no longer able to work. I went into work knowing I needed to attend an important business meeting. At the meeting we were informed that our employer was having financial difficulties and, as a result, would be cutting half of the staff. I was one of the “lucky” staff, remaining on the payroll but still losing insurance benefits beginning June 1. I gave them my doctor’s note about my worsened condition and informed them I would be applying for short-term disability benefits.
I returned home shell-shocked, not expecting I would be losing all my benefits in an instant. I began to wonder how I, a PHer, could survive without insurance and if it would be possible to get insurance with this pre-existing condition. I immediately went to Maine’s Department of Health and Human Services and applied for MaineCare. Unfortunately, I was denied due to my household assets. (Advice: Don’t buy a timeshare.)
I did a Google search for “health insurance in Maine” and received more than 9 million hits! I tried to sift through the information, but began to notice that the websites were outdated and filled with inaccurate contact information. I didn’t know where to go next. It was so overwhelming, and I didn’t get anywhere. I was without insurance for two months and the bills were racking up.
Getting Back on Track
Finally, I attended a PH support group meeting in July 2010, and when Jeannette Morrill, PH patient and support group leader, asked how I was doing, I unleashed my burdens. Everyone at the meeting said, “Don’t forget about the PHA website; it has a lot of good information.” Liz Mahoney, an Accredo representative, really went out of her way to write down and send me information by mail. She also told me that Caring Voice Coalition (CVC) could possibly provide healthcare premium assistance.
I contacted PHA and spoke to Margaret Beardsworth, the Insurance Program Manager, and she also informed me about CVC and Healthcare.gov. I called CVC and talked to someone, who also sent me information for Healthcare.gov. We reviewed the plans on the website together and discussed the best possible plan for me. CVC then participated in a conference call with my potential insurance provider to address plan questions. Given my budget, the cost for the premiums was crushing and out of my price range; I feared I would not be able to afford it! However, CVC staff reminded me that I could apply for assistance with insurance premiums.
The process for CVC’s application was very easy and the turnaround time was impressive. I was notified that CVC would reimburse $350 toward my premium! After reimbursement, the cost was within my budget. Each month I have to send in a copy of my premium invoice, a copy of my cleared payment and the shipping invoice for my Tracleer™.
My biggest words of advice for all those reading my story is don’t do it alone and don’t wait to make the call for assistance! There are many organizations (like PHA and CVC) that want to help you. You just need to ask.