From Wallace Nolen-patient advocate I am a spokesperson for a group of more than 1,000 individuals nationwide diagnosed with obstructive sleep apnea. We are all trying to get our respective insurance companies to cover an Uninterruptible Power Source a/k/a UPS due to the local electrical companies not being able to supply continuous electrical power. As a result when our CAP or Bi-PAP machines loose electricity the machine shuts down but does not automatically restart. When the air supply in the mask, tubing and machine runs out we start to gag [the same as if you placed a bag over your head like during a suicide attempt]. Unlike a predictable time, because we cannot predict when there will be power fluctuation or an actual outage regardless of the length of time we cannot do anything other than the use of a UPS. A UPS supplies constant electricity to the device at all times. When there is a fluctuation the UPS actually filters the defect since it is supplying pure electricity on its output to the device. When the power goes off completely, because it is supplying continuous electrical power to the device the device continues to work normally. Depending upon the size of the UPS and options it can be programmed to sound an audible and/or visual (for the deaf or hard of hearing) thereby alerting the patient who can then remove their mask. We have not been able to get any cooperation from the insurance industry to supply UPS devices. Many of us have appealed through the various state and/or federal agencies such denials. However we need something that we can present to support our position of need. All of us have frequent intermittent outages - in some cases up to more than a dozen times per week. There is no way to predict these outages hence the need for the UPS devices. We need anything in writing that can help support our position. We also need someone who is an expert who can testify via telephone as to the need for UPS device. We also think that our fear of using the device without a UPS is well founded and that there may be some kind of studies, etc. which we also seek. In my own case, I am scheduled in about a week for an informal hearing (before a hearing officer) employed by the Vermont Human Services Board. He will be making an assessment which will be presented to the entire Board usually within a month. My time to gather these types of documents and to find some to testify via telephone is running out. I am dying of cancer. I am partially paralyzed from the waste down and require a wheel chair. I am on SSDI due to my disabilities. As such I have limited finances. I would appreciate any attempt you can give me to help me get insurance companies to cover UPS devices, not just for me but every other person similarly situated who requires a CPAP or Bi-Pap device. Thank you! Wallace Nolen
Posted on: Thu, 31 Jul 2014 22:00:46 +0000
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