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People with MS view health insurance ills.

This summer, 366 Society members, volunteers, and staff were surveyed on their experiences with health insurance, and their views on U.S. health insurance reform.

Among our chief findings...

* Health insurance is a major source of concern, even among those who have coverage.

* Many respondents and their families have had serious insurance problems.

* Most survey participants (94%) want fundamental reform of the U.S. insurance system.

* Most (88%) think the government has a responsibility to assure access to affordable long-term care services for chronically disabled people who need them.

Who answered our survey? Sixty-five percent of the people we surveyed have MS. The remainder have a family member or friend with MS or are members of the National MS Society's chapter or national staff.

Most survey participants are female (69%), white (92%), married (70%), and well-educated (56% have a college degree or post-graduate education). Of those with MS, only 28 percent are wage earners.

Our sample was drawn from people attending an NMSS leadership conference and a random selection of members from ten National MS Society chapters.

How insurance problems affect people with MS

Seventy-five percent of respondents reported family stress and anxiety about health insurance. They are anxious about the adequacy of then- coverage for acute or long-term needs, and they worry that they might not have insurance protection in the future even if they're covered now. Not surprisingly, they are also concerned about the affordability of insurance now and for the future. And:

- 31 percent had been refused health insurance at least once due to MS.

- 31 percent had postponed needed health care because they lacked insurance or their coverage was inadequate.

- 28 percent had stayed at an unwanted job to keep their coverage. This is called "job lock"; it is one of the unseen impacts of the current insurance system.

- 26 percent had gone without needed health care because they had no coverage or their insurance was insufficient and they couldn't afford to pay for the care themselves.

- 19 percent said their insurance premiums had been raised to an unfair level.

Long-term care was most often uncovered or inadequately covered. Among the specific problems were:

- 77 percent reported insufficient or no coverage for support services such as personal care attendants.

- 61 percent were not covered or were inadequately covered for durable medical equipment such as a wheelchair or crutches.

- And 46 percent reported insufficient or no coverage for physical therapy.

- Smaller but still notable proportions of respondents reported lack of or inadequate insurance for prescription drugs (27%) and acute care.

Although 92 percent of people with MS in our survey currently have insurance, approximately one-third of them are insured by Medicare or Medicaid. These two government programs are not desirable solutions for everyone with MS.

For people under 65, Medicare benefits hinge on becoming eligible for Social Security Disability Insurance and waiting two years and seven months even if the SSDI application is accepted without a challenge. This is a serious financial and medical hardship for many and a source of anxiety for all.

Medicaid benefits require that applicants be impoverished. Meeting the means test may mean "spending-down" financial assets, which can force people to become dependent on government programs for all their needs. In the absence of a national health insurance system, guaranteed access to adequate, affordable, private coverage is needed for all; it is the only option that would offer assured, immediate protection, without impoverishment.

What system would work better? Nearly everyone we surveyed supports the creation of a health insurance system that assures at least a core of basic coverage for all Americans, regardless of ability to pay. Most also support giving people the option to buy additional, exceptional coverage if they choose to pay for it out of their own pockets.

We asked about various trade-offs to achieve a better, fairer system. People were generally more accepting of increased cost than they were of longer waits and reduced opportunities to choose their physicians.

* 82 percent would accept limits on the amount of money a court could award in a malpraetice case.

* 48 percent would accept a $200 annual family premium increase.

* 48 percent would accept a $10 increase in their cost for each doctor visit.

In contrast,

* Only 32 percent would accept a limit on their choice of physicians or specialists.

* Only 26 percent would accept long waits for high-technology, non-emergency care.

* And only 17 percent would accept long waits to see a physician or specialist for non-emergency care.

The climate for change

Recent national polls show that Americans rank health insurance reform among their top priorities for government action in the/990s. President Clinton has promised to submit a reform proposal to Congress within his first 100 days.

Clearly people need insurance coverage for acute care services. But insurance is both insufficient and inhumane if it stops at the exit door of the hospital or doctors office. Personal care services, durable medical equipment, unskilled in-home nursing care, prescription drugs, nursing home stays, and other long-term care services are urgently required. Their cost can have a devastating effect on individuals and families. The results of the NMSS survey will strengthen our case when we ask Congress and the states for insurance improvements.

What you can do

Now while the government is heatedly debating proposals, it is essential for us to keep up the pressure for change. Be part of the grassroots voice of the Society. Contact the Action Alert program of your local National MS Society chapter or write to Action Alert at NMSS, 733 Third Avenue, New York, NY 10017.

Robert Enteen, PhD, is director of Health Research & Policy Programs in the Society's Department of Research & Medical Programs.
COPYRIGHT 1993 National Multiple Sclerosis Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:multiple sclerosis
Author:Enteen, Robert
Publication:Inside MS
Date:Mar 22, 1993
Words:946
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