The Argument for Access

Fall/Winter 2009

You’ve heard it before: On many basic measures of public health, from infant mortality rates to obesity, the U.S. lags behind many other countries, while at the same time its healthcare cash register rings in at the highest in the world. For months, Americans have been engaged in the debate about just how to fix that imbalance and how to insure more Americans, as the number of uninsured is a major marker of public health on which the U.S. indeed falls behind.

In the meantime, a large cross-disciplinary team is down in the trenches deciding just what our healthcare system’s worst faults are — and how best to fix them.

The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020, a federal advisory committee composed of 13 experts from across the country, is advising the U.S. Secretary of Health and Human Services on charting a course for the future and improving the national health. Massachusetts General Hospital’s Lisa Iezzoni, MD, MSc, director the Institute for Health Policy, is one of the Advisory Committee’s members.

The report the committee will release in the coming months, Healthy People 2020, sets forth a comprehensive set of national health objectives with corresponding targets to be achieved by decade’s end. The initiative is coordinated by the U.S. Department of Health and Human Services’ Office of Disease Prevention and Health Promotion. The report will emphasize the role social and environmental factors play in health with an overall goal of achieving longer, healthier lives for all Americans.

For Dr. Iezzoni — who says the views she expresses for this article are her own, and not representative of the advisory committee — the role people’s environments play in their health is of paramount importance. She brings to bear her expertise in this area, particularly in relation to people with disabilities. And she draws from personal experience as well: at age 22, she developed multiple sclerosis and has used a wheelchair for more than 20 years.

“As much as our doctors and nurses do at MGH, what we do here is a fraction of what’s involved in making the public healthy,” says Dr. Iezzoni. “Health happens in the womb, in school yards, in school lunches, in planning how communities are built. If people are afraid to go out into their neighborhoods because crime is so prevalent, they won’t go out to exercise. We’re often quick to blame individuals for obesity but we haven’t set up environments that enable people to make 
healthy choices.”

In recent years, however, some advances have been made. For instance, cities and towns have taken steps to reduce obesity through public health directives. In 2006, New York City passed a ban on all trans-fats — also called partially hydrogenated oils — in restaurants, becoming the first major city in the country to do so; Philadelphia followed suit, as did Boston, in 2008.

Dr. Iezzoni says she’d like to see that Healthy People 2020 includes a true picture of the state of health for people with disabilities and recommendations for improving the health of this group. That information will shine a new spotlight on people with disabilities. Healthy People 2010, the last iteration, did outline objectives on disability and recognized that persons with disabilities experience disadvantages in health and well-being compared to the general population. In 2005, the U.S. Surgeon General issued a “Call to Action,” reporting that the many disabled Americans still lacked equal access to health care.

In a speech before the Senate Health, Education, Labor and Pensions Committee last winter — testimony that drew upon public health approaches that will be outlined in Healthy People 2020 — Dr. Iezzoni described how persons with disabilities tend to have multiple socioeconomic disadvantages. The list is long: lower levels of education; lower employment rates; higher rates of poverty; problems finding safe, accessible and affordable housing; higher rates of depression and anxiety; higher likelihood of being victims of crimes and domestic violence; and higher rates of smoking and obesity. The disadvantages tend to be even more marked for racial minorities with disabilities.

Indeed, today — 20 years after Congress enacted the Americans with Disabilities Act prohibiting discrimination against individuals with disabilities and mandating their ability to fully participate in all aspects of society — Americans with disabilities still face numerous challenges, she notes.

Dr. Iezzoni also told the Senate committee that some persons with disabilities might not understand fully their health risks for common health conditions so prevalent among aging Americans, such as various cancers. They may have “magical thinking — the belief that because they already have one significant impairment, it is unlikely that more can go wrong with their health,” she reported. As a result, many do not seek routine screening services.

People with disabilities also continue to face “discrimination and stigmatizing social attitudes in the healthcare setting, too.” Dr. Iezzoni said in an interview with Mass General Magazine. For instance, many physicians do not discuss contraception with disabled women, under the erroneous belief that they are not sexually active, she says. In a survey of Los Angeles County, nearly a fifth of severely disabled people reported being unfairly treated in their healthcare provider’s office.

Beyond discrimination, physical barriers often prevent persons with disabilities from receiving health care. “So many doctors’ offices in communities around the country aren’t outfitted with ramps, curb cuts and elevators in and around them, so literally getting to the doctor is a major problem for many people,” she says. Once inside, equipment like weight scales, exam tables and mammography and other radiology equipment are inaccessible for many disabled patients — preventing doctors from performing routine exams and treatments.

Persons with hearing or vision impairments also face communication barriers in the healthcare setting. So too, do patients with speech impairments and those with cognitive and developmental disabilities. But rigging the doctor’s office with the appropriate tools just isn’t enough, cautions Dr. Iezzoni. As one of many examples, federal legislation requires eight-point type for nutrition labeling on packaged foods. Reading such small print is difficult for many aging eyes — and impossible for persons with significant vision impairments.

With between 40 to 54 million Americans currently living with disabilities — numbers that continue to balloon with the aging of the Baby Boomers — Dr. Iezzoni suggests that the country needs to change how it designs the environments in which we live and the products we use. “Everything designed by humans for human use should consider the principles of ‘universal design’ — striving to make the item, service, equipment, physical environment or other product as accessible as possible to persons with a variety of physical abilities and disabilities,” she says. “Universal design is a mindset that involves everyone.”

Dr. Iezzoni says that public health officials recognize the barriers experienced by people with disabilities. But, she says, the hurdles that lie ahead — and which Healthy People 2020 will articulate, thanks in part to her input — are grappling with both the increasing numbers of Americans with disabilities, as the population ages, and building broad consensus and action, throughout society to improve access to health care and prevention.

Ten years from now, when Healthy People 2030 goals are being set, we want to be light years ahead of where we are today.