In September 1997 The Human Ecologist, HEAL’s flagship publication, published a short questionnaire about issues that concern HEAL’s members. The responses began to come back almost by return mail. We at HEAL share in our members interest and concerns. We have continued with the questionnaire in our “New Member Package”, and continue to receive responses to the questionnaire. And use them to create articles that are of great interest to our members. Here are some of the results.
Most respondents identified themselves, directly or indirectly, as having an exposure-related illness -- an illness either caused or exacerbated by environmental exposure. The number one concern of this group was:
- “Lack of informed health care providers, especially physicians.”
- Respondents expressed frustration at the lack of care providers who understand the relationship between environmental exposure and health.
[Note: These respondents are correct in noting lack of informed care providers: The Agency for Toxic Substances and Disease Registry’s instruction module on taking an exposure history noted a survey of patient files in a teaching hospital in which 98% of the patient histories had *no* environmental exposure or occupational history included. Since 1987, the Institute of Medicine has repeatedly expressed concern about the lack of physicians in practice who lack basic skills in occupational and environmental medicine.]
The second most-frequently reported concern in this group is related to aging and long-term health care:
- “As I get older and fear I may have to have long term health care and no one understands my condition, I get very scared.”
- “My most pressing general health concern for the future is being able to find housing that I can tolerate either in assisted living or nursing home.”
- “My greatest health-related fear is being unable to care for myself at some time in the future.” “ As I grow older (I’m now retired and able to care for myself) [I fear] I will be unable to in any way control my environment because of general indifference to the problems of the chemically-sensitive.”
- “My greatest fear is being dependent on others for daily living.”
This group fears that, with advancing age, they will be compelled to entrust their well-being to health care professionals who do not understand the importance of environmental exposure avoidance in health and disease. We predict that as the “baby boom” generation ages, and the connections between environmental exposure and human health become ever more apparent, these concerns will become more widespread.
But like our respondents, we are concerned that the health care professions will be unable to meet the needs of this group as they age and become more dependent on both medical interventions in declining health and the help of others in increasing frailty. This is clearly not a situation that will be “fixed” by good intentions.
Many HEAL members have exposure related illnesses, including allergy, asthma and multiple chemical sensitivities (MCS). In September 1997, The Human Ecologist published a member survey questionnaire in fill-in-the-blank format. Readers were asked to complete 10 sentences. There were no cues in the questionnaire that would suggest any preferred area of concern, or prompt any particular response. No incentives were given to HEAL members for participation in this survey; forms were returned to HEAL at the respondent's expense and in the respondent's own envelope. The following are verbatim responses. They have been divided into several issue areas for clarification; respondents were not aware that their responses would be sorted in this fashion.