Inaccessible Medical Equipment: Have You Experienced It?

by Chris Gray

I'm thinking today about a good friend of mine who got into serious trouble when he needed to use some inaccessible medical equipment.  He was suffering from a serious illness and got a secondary infection.  After nearly two weeks of hospitalization and antibiotic therapy, his insurance dictated that he go home.  To administer his required daily antibiotics, he would be provided with a special infusion pump and bags of the antibiotics.  The administering process would take about 30-45 minutes on a twice-daily basis.  The machine dispensing the antibiotics requires monitoring of a visual display at the very least for use, something neither he nor his wife could do because both are totally blind.
Depending on insurance coverage, this can put a person into some pretty grim circumstances.  Staying in the hospital for 8 to 12 weeks, the period of time needed for this therapy, is too expensive.  Having to go to a nursing home is a prospect many people cannot face because nursing home care can be so restrictive.  But how does a blind person stay at home when using the equipment that may cure them is not possible?  About the only alternatives are family, friends, or paid nursing care, which often is not covered through insurance.
We are already and will continue to become more and more reliant on technologies that deliver sophisticated health benefits in the home.  Theoretically, this lowers medical costs by keeping people out of the hospital.  For those of us with inadequate vision to use the equipment that delivers these health benefits, things are going to become increasingly difficult.  This goes far beyond testing equipment such as a blood glucose meter, though such testing equipment is growing in variety as well.  For example, strips that can indicate the level of a person's blood viscosity are becoming more commonplace in the home.
Medical technology is a wonderful thing.  But we must be more concerned than ever about its accessibility.  It is imperative that we make hospitals, clinics, and the FDA aware of the problems brought to the blind by this technology.  The issues are solvable, but not without direct buy-in from the companies creating this technology. 
ACB's health issues task force is working to increase awareness at the NIH and FDA.  We are asking that readers of "The ACB Braille Forum" contact us with stories like that of my friend.  He was never entirely cured of his infection, which almost certainly contributed to his untimely death.  Let us hope for better scenarios and outcomes in the future.
To let us know about a situation you have experienced or about which you have significant knowledge and information, please contact the health issues task force and tell us your story.  To assist you in doing so, the Missouri Council of the Blind has made available a special voicemail box in which you can leave a message.  Call MCB at (314) 832-7172 and ask for the health issues task force special extension.  Leave us a message, or leave your contact information so we can get in touch with you.