ALS From Both Sides, Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

Equipment Cost

Insurance policies vary widely in their coverage. The most important step is to be certain that the DME (Durable Medical Equipment ) provider is covered by your insurance if your insurance requires you to use "in network" doctors and other providers. If your copy of the policy isn't specific you may want to call the insurance company. I don't particularly trust insurance companies and I am not certain I would want to give them a heads up on what you are considering doing. If you call them, document what you are told, the date, time, names and job title of the person you talk to, and take notes.

Talk to respiratory equipment suppliers in your area. Your insurer may be familiar to them so they may be able to tell you what is covered. Make an appointment to see or call someone at the billing department, not whoever answers the phone. Document what you are told, the date, time, names and job title of the person you talk to, and take notes. Ask how much they charge for vent rental as well as for supplies; hoses and filters, suction machine, suction catheters, gloves, replacement trachs, gauze squares for around the trach, neck collars for the trach. Ask what the requirements are to have a backup vent. All this will give you some idea of what to expect—and contact people to call when the bills are undecipherable!

If the monthly out of pocket expense is obviously unaffordable, ask the vent supplier if they have a financial assistance program.To apply for assistance you need ask for a form to fill out. (they don't automaticaly offer it!) It is a standar report on income and expenses. You may be eligible for reduced rental or even no rental fees.(I currently don't pay any ventilator rental fee thanks to my provider's Financial Aid program.)

By the time you need a ventilator you will be eligible for Medicare (if you have paid into Medicare). The tricky part is whether Medicare will be your primary insurance (pays first and any remaining amount is then filed with any other insurance you have) or if it is secondary (filed after your other insurer has paid their allowed amount.) If you are covered under a company policy of someone who is still working, Medicare will be secondary. Medicare will be primary if the policy holder is retired even if their retirement package includes a Medicare Supplement policy.

The best I can do is give you a typical 2016 cost. (Remember, this is my cost and every equipment supplier and insurance is different!)

It is possible to purchase your own vent but you will not receive any of the services provided along with vent rental. When you rent, a Respiratory Therapist visits frequently at first, then less often. The therapist does no patient care. The therapists are there to check the equipment, not the patient. If I have any problems I call the doctor and the therapist can intervene to work with the doctor to change settings or recommend other equipment. During visits, the therapist will run checks on the vents, suction machines, batteries, chargers or other equipment. They arrange for very prompt replacement if needed. They keep records of all the machines so they are regularly exchanged and sent in for a full "tune up". They are on call 24/7 for equipment emergencies. Equipment is replaced at no charge if there is a problem with it. We order our supplies by phone through our vent provider as well and they are very prompt with most items.


Back To Top