Throughout this series on “real patients” and how the Affordable Care Act will affect them, we’ve talked to many people whose stories illustrate how difficult it is to get and maintain adequate and affordable coverage. There are so many hoops for a consumer to jump through to understand what their options may be, and that’s no easy task even for the healthy. But add to that a serious health condition and the drain that can take on a person’s energy and time, and it can be impossible.
Karen McMullen with her son Sean
That is the case for Karen McMullen as she waits out the two-year gap between the employer-based coverage she had while she was working and the Medicare coverage she can get based on her disability. Karen was diagnosed with Multiple Sclerosis (MS) when she was 38. She was working at the time and had good health benefits through her employer. For about 10 years, she was able to obtain her prescription medicine for a $30 copayment, which allowed her to live and work without symptoms.
Then, about 3 years ago, she noticed that every time she got up from her desk, her legs were really tight. Karen was working a lot of overtime during a busy season as a mortgage loan processor, so she chalked up the problem to getting old and not enough exercise. But it wasn’t that. She was experiencing one of the more common symptoms of MS, spasticity in her legs, which made it difficult to walk without a cane. Her doctor recommended that Karen take a 6 month short-term disability leave from work, hoping that rest and time away from the office would help reduce the muscle spasms that prevented her from moving freely.
However, once she was back at work, it became clear she wasn’t bouncing back and in fact was getting worse. Karen’s walking challenges were not the problem. MS imposes more than physical burdens on its sufferers – it also causes cognitive challenges, such as an inability to concentrate. For Karen, MS’s pernicious effect on her ability to focus and multi-task made it increasingly difficult for her to do her job. Her doctor told her she should stop working permanently because of the severity of her symptoms. But Karen was hoping to put off that day, and worked as long as she could before taking a second short-term disability leave. It was during that time that she came to terms with the difficult reality of her condition. MS is a chronic, progressive disease, and she would never again be able to effectively perform in a job she had taken great pride in for 22 years. While still out on short term disability, Karen applied for Social Security Disability Insurance (SSDI), a federal program that provides income support to individuals and their families if they have worked and paid Social Security taxes long enough to qualify for benefits.
Karen was approved for SSDI in March 2012, which also made her eligible for Medicare benefits. But Medicare rules require her to wait 2 years for coverage to start. Karen knew she would have this wait – and no more employer-paid coverage – so she started COBRA continuation coverage from her former employer in February 2012.
COBRA premiums are typically expensive because enrollees must pay the full premium. Karen found it increasingly difficult to meet their COBRA premiums of $1,335 a month on their $2,250 a month income. Based on their income, their kids were eligible for CHIP but had to be uninsured for 90 days in order to qualify under New Jersey’s CHIP waiting period. It was a difficult decision, but in order to provide her children with more stable coverage and protect the family’s financial security, they took the risk and the kids went without coverage for 90 days. Karen and her husband also had to make significant withdrawals from their retirement accounts to meet their costs, including COBRA premiums.
Fortunately, covering the children under CHIP reduced their COBRA premium to $840 a month. And with help from a program funded by the MS Society, she qualifies for physical therapy visits her plan won’t cover. Her plan covers no more than 60 therapy visits a year (just a little more than one visit per week). But her doctor recommends physical therapy 3 times a week to maintain at least some strength. Karen credits the therapy with helping her maintain her ability to walk, although with difficulty, and building up enough arm strength to be able to use arm brakes to drive a car.
Karen is far from alone in her wait for Medicare coverage based on SSDI. There are about 1.8 million people caught in the same 2 year wait. Some have access to COBRA, like Karen, but at great cost. Others are uninsured until Medicare coverage kicks in – about 1/3 of all people in the waiting period, by one estimate.
Beginning in 2014, the ACA’s Health Insurance Marketplaces will make it possible for individuals in the Medicare two year waiting period to gain coverage. Because the ACA bans discrimination based on health status, the coverage won’t cost people with disabilities more than people who don’t have pre-existing conditions. And many, like Karen McMullen, will qualify for financial help paying their premiums and cost-sharing. The Marketplaces will help fill the gap for those who fall through the cracks of our employment-based system of coverage, including those between jobs, and those who must stop working before they are eligible for Medicare.