My husband Paul Berger suffered a stroke resulting from a ruptured aneurysm when he was 36—that was 20 years ago. Some things have improved, like treatment—the CT scan then could tell there was bleeding in his brain, but couldn’t locate the site of the burst vessel. A week later, after a follow-up test, he had brain surgery to implant a platinum metal clip. The night before the surgery, he had a re-bleeding, which probably caused the severe stroke, devastating his speech-language functions, and paralyzing the right side of his body. If this had happened today, the improved diagnostics probably would have located the problem immediately, and he might have had a coil or stent threaded through the blood vessel to the aneurysm, instead of opening his skull. He might have had a shorter recovery and little residual disability and I might not be writing this blog as a caregiver.

Some things have not improved—like health insurance coverage. As the years have gone by, coverage for hospital stays and rehabilitation have been shrinking. For example, Medicare has a cap on outpatient rehabilitation that makes no sense—it’s not capped if performed in the more costly hospital outpatient department, but limited to about $1,800 for physical and speech therapy combined, and $1,800 for occupational therapy provided in an office. At current rates, that’s about 45 hours of total therapy, not nearly enough for stroke recovery (to be fair, there is an exceptions process, but it is scheduled to expire at the end of this calendar year).

This leads to a more difficult issue in the health reform debate—what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching? Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through “pre-existing conditions” ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.

I am all for patient responsibility, but I am a health policy expert, not a therapist. And as a wife, it strains our relationship for me to drill my husband on therapy exercises or correct his aphasic speech. Over the years, we’ve been creative and resourceful, and sacrificed. We’ve found wonderful rehabilitation professionals who have coached us on our main goal—making my husband as independent as possible. And my husband has a great attitude—he pushes himself to do more. Going back to work full time was one of my husband’s goals that he achieved. As he regained his independence, so have I, giving us a more “normal” family life.

We have been lucky, but there are many families who don’t have our resourcefulness to set goals beyond insurance limits. When a stroke survivor doesn’t reach his full potential for recovery, everyone suffers. Working-aged survivors often lose their jobs, income and benefits; and caregivers are likely to be less productive at work or forced to cut back hours, putting their own benefits at risk.

Health insurance reform needs to provide accessible, affordable ways to make health insurance available, even to people with pre-existing conditions. Health system reform needs to provide pathways for regaining and maintaining health and independence for the patient and the family.

Related posts:

1. A Caregiver’s View of the Stimulus Bill
2. Comparative Effectiveness Research from a Caregiver’s Perspective
3. May is Stroke Awareness Month & Congress in High Gear on HHS Appropriations
4. Video blog roundup: Health care reform debate goes public
5. The Patient Centered Medical Home Model: A Way to Cost-Effectively Improve Quality of Care

This entry was posted on Sunday, July 12th, 2009 at 12:54 pm and is filed under Caregiving, Health Reform, Insurance. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.