HEAL members speak up

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.

My general concern about personal health has changed in the last five years because...

Issue area: multiple chemical sensitivity (MCS) and related]

• developed MCS, severe food allergies 1 year ago
• New case of MCS.
• With proper [exposure and other] management and control I am improving.
• A few months after moving to Florida I tested very reactive to numerous chemicals.
• I have become disabled [MCS]. I'm learning why and how to do things to try to get better. This has isolated me due to ignorance of others.
• Five years ago I was incredibly healthy, worked out regularly at gym, aged 52, grandmother of 6 and no major health problems, 4.0 in grad school. Now I have severe reactions to all chemicals.
• Chronic irritation of lungs at very low PPM levels.
• Information from HEAL has helped me to understand exposure to chemicals.

Issue area: toxic

• More concern by public about dangers of pesticides; also less smoking exposure.
• State leaders sell out to any dirty industry -- no interest in environment.
• My health deteriorated rapidly probably mostly due to Dursban and housing, and I acknowledged a probable causal relationship. I used to ignore or try to tough it out--now I know that won't work.

Issue area: health care

• Treatment through nutrition by my environmental doctor.
• Unsuccessful hip replacement and reconstruction.
• I realized I will never be cured [MCS].
• I am no longer critically ill with MCS, but neurological and memory problems have worsened.
• I developed diabetes in addition to MCS asthma, fibromyalgia etc.
• I am coping well thanks to environmental medicine, other treatment.
• I have less confidence in the changing health system.
• Had to move because of my husband's illness -- deadly for me.
• My allergies are worse if possible! I can't have anything for pain.
• I feel like I'm fighting a losing battle because of inability to take medicines and more chemicals of a bad nature in products are hard to avoid; I have felt helpless with my health problems. Thank you for all you do.
• I no longer have hope for recovery

Issue area: quality of life

• I moved and I'm somewhat better.
• So many more people are aware of MCS (except MDs) that I no longer feel totally weird.
• I've lost hope and I'm fearful of not having enough money to take care of myself.

--HEAL Public Information Committee
 

HEAL members speak out about fragrance

The overwhelming majority of HEAL members report having health conditions that require exposure avoidance as part of symptom management. In September 1997, The Human Ecologist published a member survey fill-in-the-blank questionnaire, to gauge member perceptions of their health-related concerns. Responses began to come back almost by return mail, and are still arriving in the HEAL office. A significant percentage of all respondents reported difficulties with exposures to fragrances used by others. Here are some verbatim samples of how HEAL members filled in the blank in the following sentence

My most troublesome exposure is:

Who is vulnerable to environmental exposures?

"HEAL's purpose and goals concern the effects of environmental exposure on health, not just for those who have already been adversely affected, but also for those portions of the general public who are potentially at high risk for adverse effects from...environmental exposure[s] by virtue of their age, state of health and immune status, state of development, and other characteristics....
[The Governing Board] believe[s] that a list of high-risk groups includes the following:

1. the chemically sensitive
2. women of childbearing age
3. pregnant women and their fetuses
4. all children under 15 years of age
5. the immune-impaired
6. the chronically-ill
7. the poor
8. all those whose employment involves work with or around [hazardous materials]"

--from a HEAL Governing Board comment to the US Department of Agriculture,
 May 1993.