By Joanne Volk, Center on Health Insurance Reforms

What would you do if you had a health care condition that required regular, costly care your whole lifetime? You’d probably be sure you had uninterrupted health coverage so you could get the care you need without bankrupting your family. For tens of millions of Americans like Martin Addie of Missouri, that simple goal can be very hard to achieve. Martin has hemophilia, a rare blood disorder, and has managed to maintain health coverage since his first job with health coverage in 1984 so he can get the life-saving treatments he needs.

Maintaining health care coverage has been like a high wire act without a net for Martin as he had to jump from one plan to another to keep coverage. He had to make the right move at just the right moment when his benefits were about to run out or risk falling through the cracks and having nowhere to turn for coverage. But the Affordable Care Act (ACA) has gotten him out of the coverage circus and back on solid ground.

One major goal of the ACA was to help people who hit a lifetime dollar limit on their benefits – effectively cutting off their coverage for good. It’s estimated that about 102 million people in the U.S. are in plans with a lifetime limit and about 20,000 people hit them each year. So while it may seem like a small problem overall, for the people affected, it’s often a matter of life or death. People with hemophilia are just those people – the coverage they absolutely need may run out under a lifetime limit on benefits.

The number of people living with hemophilia in the U.S. is quite small – about 18,000 – but the cost of routine care is enormous. People with hemophilia completely lack or have too few of the proteins needed to form blood clots. Depending on the severity of the disorder, people with hemophilia may have prolonged bleeding from even minor cuts or injuries or life threatening bleeding from more serious injuries. To protect against that, patients get clotting factor, to replace what they are missing.

Martin has severe hemophilia. His body produces less than 1% of the clotting factor he needs, so he administers clotting factor every other day to prevent bleeding, at a cost of $50,000 to $60,000 per month. Bleeding into his joints has caused them to deteriorate, so he has had one total knee replacement surgery but lives with limited function and pain in his other knee and both shoulders and elbows. With costs like these, Martin has blown through lifetime limits with 3 different plans.

When Martin was working, his employer plan had a lifetime limit of $1 million. When he hit the limit, his employer agreed to raise the lifetime limit to $2 million, but Martin reached that too, cutting off his coverage altogether. Under a federal law known as HIPAA (the Health Insurance Portability and Accountability Act), Martin then qualified for coverage through Missouri’s high-risk pool, which provides coverage to people who can’t get other coverage because of pre-existing conditions. But the high-risk pool had a lifetime limit of $1 million, so Martin hit that, too.

He then enrolled in his wife’s employer’s plan. That plan also had a $1 million lifetime limit on benefits, and Martin knew it was a matter of time before he was at his limit again. Because he had to retire on disability, Martin qualified for Medicare, but faced a two year wait for coverage to begin for people who qualify based on disability. He knew his coverage under his wife’s plan was going to run out before his 2-year wait was up and he couldn’t risk a gap in coverage, so Martin took some chances with his routine care – using an older, less safe clotting factor less frequently – and put off knee replacement surgery so he could stretch out his benefits on his wife’s plan and prolong the day when he would once again hit the benefit limit.

That day came in April 2010. Fortunately, Martin was able to reenroll in the state’s high-risk pool with the help of HIPAA. He didn’t have to wait for Medicare to begin in order to retain coverage. But he was back in a plan with a lifetime limit on benefits, and it was just a matter of time before he would have to find other coverage and his options were running out.

Thankfully, before that happened, the ACA was enacted, bringing an immediate ban on lifetime limits. The new law also put immediate restrictions on annual dollar limits and bans them completely in 2014. Martin’s coverage never included an annual limit on benefits, but about 18 million Americans are in plans that have them. The ACA also required plans that cut people off because they hit a lifetime limit to allow them an opportunity to reenroll in the plan. Martin reenrolled in his wife’s employer plan in October 2010.

If following all of Martin’s coverage challenges feels like a circus, you begin to understand what our fractured health insurance system can feel like for people with serious, chronic and rare conditions. There’s the high wire act of trying to balance health care coverage limits without a net, the carousel of confusing coverage options, and the roller coaster of emotions. Martin described his journey like this: “It’s an incredible amount of stress and uncertainty and at times despair and hopelessness when you can’t see any options.” When he’d get other coverage after hitting a limit, it was like “getting some breathing space, but you know it won’t last and there seems to be no light at the end of the tunnel.”

To navigate it all, Martin had to become really good at writing letters and researching his options under various programs. His work and prayers paid off – he managed to keep coverage throughout – but at a personal cost. “The stress and worry probably contributed to other health issues and got in the way of good relationships,” he said. As he scrambled to make one plan stretch and line up the next, his son was getting ready for college and his daughter gave birth to 3 grandchildren. He would have loved to have had more time for his family, but keeping coverage was always looming over him, as it was a matter of life and death.

The ACA ban on lifetime limits means Martin can stay in the coverage he has. No longer will he have to put his health at risk with less than optimal, routine but life-saving care so his benefits can last a little longer. Without the ACA ban, Martin was sure to hit the lifetime limit again and lose the coverage that worked well for him.

Lifetime limits may have affected a small number of people, but the consequences of that small impact were huge for the health and well-being of the families they hit. For Martin, he can step out of the 3 ring circus of stress, despair, and hopelessness and focus on his family and the things that matter most to him, instead of worrying about where to go when his coverage runs out.