There’s a lot of talk these days about health care reform and making sure the uninsured have coverage. I don’t want to debate the strengths and weaknesses of the law but I do want to comment about the struggles associated with having a chronic health condition and how much is not considered when adding up the cost.
Fortunately, most of Lynn’s prescription costs are covered. If we didn’t have insurance, our cost would be over $5,000 per month for just his MS drug. In addition to his MS medication, he takes meds for other conditions like high blood pressure, mitral value prolapse, neurogenic bladder, MS depression, hypothyroidism, and others. Just the cost of meds alone would send us into bankruptcy or more likely, we just couldn’t afford for him to take anything if we didn’t have insurance coverage. Total cost for his meds last year (insurance + copay) was $58,000!
Besides medication, his dietician has him on numerous dietary supplements to support neurological cell regeneration and to assist with energy and autoimmune responses. We spent $6,500 for those last year. That does not include the fact that most of what I buy for him now is organic or meats that have been grass fed. Don’t know if you’ve checked out the price of organic food lately but it’s not cheap. Grass fed meats and pastured poultry is also much more expensive than buying the store brand. We have discovered that his body does not eliminate harmful chemicals ingested or absorbed and that he’s been storing them up for years. We are working now to get rid of all those toxins so the last thing I want to do is put more in there from fertilizers, hormones, or other chemicals used to buff up the animals or prolong storage and/or appearance.
Totaling our cost continues: food and medications–covered; now for supplies.
Each month, I order medical supplies (self-catheters, in-dwelling catheters, gloves, lubricants, catheter insertion kits for travel, etc., skin care and barriers, lotions and ointments for various needs, and miscellaneous other supplies particular to his care. I have shelves in an unused room full of such daily used supplies as well as other “in case of” supplies.
All of the above are the routine costs of daily living, but there are other more costly purchases which fortunately do not occur every day but when they do happen, they really take a toll on the purse strings. For example, at various times we have purchased a cane, rollator, manual wheelchair, bedside commode, shower chair, and power wheelchair. We were fortunate beyond words to have our church donate the cost of putting in a ramp so Lynn could get into and out of our house and a roll-in shower to make it easier to bath him. Our house is a rancher so we have not had to decide between moving, putting in an elevator, or redoing a lower level to make accessibility available inside the house. Others, I know, have not been as fortunate.
One of our most expensive purchases was a conversion van–a Chevy Outlander that was converted so that an electric ramp would lower to allow wheelchair access. The passenger seat is removable to allow Lynn’s wheelchair to be upfront next to me as I drive. The van was significantly more expensive than the typical Outlander and there is no discount for buying a vehicle that is designed for use by the disabled.
One expense I have so far avoided is paying a caregiver. I’m fortunate to be able to work from home and friends or family stay with Lynn when I need to be gone for several hours. I know, however, that the day will come when I’ll need to pay for care for him and where that money will come from, I don’t know because that expense is not covered by insurance. I don’t want to even think about how much that will cost.
My purpose for listing all the above expenses is to show that having a disability is not cheap! Lynn receives just under $24000 from Social Security per year—that’s not enough to cover the cost of his medications. I sometimes hear people comment about how nice it is that Social Security is provided and it is, but it falls far short of the amount of money needed to truly take care of someone who cannot care for themselves. As I mentioned before, we are very fortunate that we have the support of our church family who do so much for us. We are blessed beyond what words can express by their generosity; plus our families have helped out as they can. However, I know that not everyone is as fortunate as we are and therefore, many with MS must go without the care they need or the medications that could perhaps slow the progression of their disease. How unfair that seems to know that a person’s ability to improve or have a chance to survive is all based on how much he/she can afford.
So when I hear about healthcare reform, I know the current law is a long way from what is needed to benefit those with chronic conditions. There is much that needs to be reformed about insurance and other benefits to support those who are disabled, and I know that many are working toward that end. But one thing I do know for sure, I am fortunate to have insurance and thankful for every dime they have paid on our behalf because I know for a fact, without it, Lynn very likely would not be here today.
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