I grew up in Wisconsin the sixth of 2 girls and 5 boys, and moved with my parents and younger brother to Houston, Missouri 聽in 1978 after graduating high school. My younger brother, myself and an adult nephew have severe hemophilia and my sisters are carriers. My wife Janeen celebrated our 30th anniversary in June of 2011!

Insurance has been a lifelong issue for me. My first job as a Sheriff’s dispatcher had no benefits except a paycheck. I depended on the Missouri hemophilia program for factor for 6 years. I have lots of joint damage due to my lack of aggressive treatment and stretching benefits.

In 1984 I got a new job with insurance with a million dollar cap. Factor was relatively cheap and I did not consider using it up until HIV became an issue and the prices of factor sky rocketed. In 1989 I began working at 911 to keep my insurance. While working part time on a hemophilia outreach grant in 1989, I met hemophiliacs who lived with so much fear of HIV that they would not treat themselves, and others who were so afraid of having a bleed that they totally limited their activities. One man was afraid to use tools or use a stepladder to change a light bulb. I met a family that had a 10 or 11 year old who had never been treated.

I met first lifetime cap in the mid-90s. My employer raised it to 2 million for all employees, and life seemed secure. But in the early 2000s I was approaching another. I was accepted into the Missouri health insurance pool with another 1 million limit in summer of 2002. I worried what about when that ran out; my employer refused to commit to assist if I capped on the pool. As it happened because of HIPAA (Health Insurance Portability and Accountability Act) laws I was able to get on my wife’s insurance in summer of 2006, so a million dollars now would last about 4 years. I had another limit again but what would happen when I used that up?

In 2008 I began looking in to any options I could think of, contacting lawmakers to get suggestions or change laws, trying to get on the insurance pool. I needed replacement of several joints because of damage from bleeds, and did not have enough coverage, so those are still waiting. I rationed my factor to try to make the caps last longer, contributing to more damage.

I looked for other options for insurance from large groups such as the NRA, AARP, my union, neighboring states high risk plans. It is very costly to move and establish new residency. Disability and retirement with eventual Medicare seemed like the only option at the time.

I got lots of advice, studied HIPAA and COBRA (Consolidated Omnibus Budget Reconciliation Act ) laws to see how they might affect my situation. I learned that I could apply for SSDI while using sick leave or vacation as long as not expecting to be able to return to work; the treatment center staff supported my decision.

I was told I could not get back on the pool. The insurance commissioner’s office suggested I try to find an insurance company that would write a policy, but no luck there. Only things I could find were small hospital indemnity or discount plans that would not cover factor or other meds.

In the fall of 2008 I used FMLA (Family Medical Leave Act) leave and applied for SSDI approved in 23 days, another answer to prayer! Then I applied for pension disability that was also approved, I retired on SSDI and disability pension in May of 09 after using up 6 months of accumulated sick leave. But that still left a 24 month waiting period before Medicare, and maybe 6-12 months of insurance.

I asked my employer: as part of my retirement would they cover me until Medicare when I capped? NO

I appealed to my wife’s plan: would they extend the cap to Medicare? NO

I contacted politicians trying to get a waiver of the waiting period; I was told that even the President could not get one unless he had Kidney disease or ALS.

This story is extremely condensed, I made lots of phone calls, sent tons of emails, read hundreds of pages of laws, and bills.

What about Medicaid? To qualify you must be indigent and would likely have had a $3000 or higher monthly spend down. An attorney and my state rep suggested divorce and putting things in my wife’s name or giving away our assets to qualify, we could not morally do that.

After lots of praying and searching I felt led to email Sally McCarty, an insurance consultant with the Indiana Chapter of the National Hemophilia Foundation. Sally worked with Jim Mayhew of CMS (Centers for Medicaid and Medicare Services) and HHS (Health and Human Services) for a couple of months, and they felt that under HIPAA rules I would qualify for the Missouri insurance pool as a federally eligible person when I capped on my wife’s plan. During this time I was still making other contacts and looking for other options to fill the potential gap.

In November I talked with the executive director of the health insurance pool, Vernita Bridges McMurtrey about trying to get back on the pool. Mrs. McMurtrey said that if Jim made a federal decision it would overrule Missouri law and be in effect in all 50 states. Potentially this could help lots of people in similar situations. But with current law I could not get back on the plan as I had used the maximum.

In December Sally contacted me to see if I had heard anything from the pool. I had heard NO, so she contacted Jim, who said things were supposed to be taken care of. He must have made some calls as later in the day I was contacted by Mrs. McMurtrey, who told me that the decision had changed and I would be eligible for coverage. Mr. Mayhew did write a letter to all 50 state insurance commissioners regarding lifetime caps and HIPAA eligibility on December 15, 2009 that addresses situations similar to mine.

What an answer to prayer! To go from hopeless to hopeful with things falling into place.

Before I was actually covered on the plan there was a lot of negotiating between the pool and my current home care provider to get them considered part of the network as it would save the pool considerable funds over the network big box pharmacy, and be easier for me. Insurance companies are usually interested in saving money; it is a powerful negotiating tool.

In March the President signed reforms ending lifetime caps, so I tried to get my wife’s insurance to just end the cap now. NO dice. 聽Many large insurance companies did end their caps early.

I capped in the end of May and started on the pool without a gap in coverage.

With reforms I was able to be back on my wife’s plan in October 2010. I am looking forward to maybe being able to get some needed repairs and not worrying about insurance limits. I have a knee replacement scheduled for late summer, and may even be able to later replace the other one that has been frozen for 30 years.

I was eligible for Medicare Parts A & B in April, however I learned that if you have employee based group insurance you can delay beginning Part B and hunting for Medigap or supplement and Part D plans without future penalties. You can sign up whenever you are ready. I delayed partly because I am concerned what changes will be made to Medicare by the current crop of politicians!

Some points that I want you to take home:

Living with my health problems has shaped me into the person I am. If not for the trials in my life I likely would be a much different person! Maybe I would have become someone with less compassion and faith and understanding.

With all my years at 911, one of the most important things I learned is to document everything. Keep notes of everyone you contact and what they said. Keep your correspondences. Complete documentation and good records is part of why my application for SSDI was quickly approved. Also it keeps you from wasting time and going down dead ends you have explored before. If it was not for keeping track of things it would be hard to accurately tell you my story!

Educate yourself about what may be available; the Internet is one of many valuable resources.

Know the details of your plan, or any plan you are considering. The insurance company may make mistakes, and it will be up to you to find them.

No situation is hopeless. Don’t take no for an answer. Keep digging, don’t stop looking, and don’t give up.

Appeal to logical negotiating.

Plan for your future it will happen whether you are prepared or not. I wasted time after learning about my HIV infection in 1987, thinking I had no future and failing to make plans for things I did not think I would live to see. I am still here, which is a great blessing!

Ask for help wherever you can. Ask your doctor, talk to your treatment center social worker, your reimbursement specialist. If you do nothing, nothing will be accomplished. Reach out to the community we all need to help each other.

My father told me a long time ago the only dumb question is one you’re afraid to ask. My mother once told me that my dad was proud to see me taking care of myself after getting my first job, as he had always worried that we would not be able to!

You are your best advocate; don’t be afraid to ask for what you need!

Take care of yourself to the best of your ability; I would be in better shape today if I had not been worried about running out of insurance. And occasionally (and I use that loosely), I treat a bleed and go back to whatever I was doing without following the Rest Ice Compression and Elevation principles. I think most of you have done that right? I won’t tell your nurse if you don’t tell mine!

Be creative in adapting to your abilities. There are many ways to do things besides brute strength, which I don’t have. Your brain is much stronger than anyone’s back. Learn your talents and use them!

I use a Hoyer lift and a hydraulic cart in my work shop to pick up things I can’t lift, and I use dangerous tools CAREFULLY! I installed an electric jack on our camper鈥攊t sure saves on elbow and shoulder problems.

Finally I would like to say there is something fundamentally wrong with a system that requires us to be less than we can be, in order to get the assistance we need. Scriptures say if you give someone a fish they will eat today, but if you teach them to fish they can catch their own. I sincerely hope that with our combined efforts and reforms there will be a system of equality in medical care so no one will have to choose between taking care of themselves or not!

Check our Martin’s Voices video:

Sign up for E-mails, Dateline Magazine, and other ways to stay connected.