Our son Matthew was first diagnosed with severe asthma at 9 months of age. At 18 months, after an extremely critical episode, we were told that one of us would have to leave work to take care of him full-time. Ultimately, although I was the one with medical coverage, as my husband Mike was a consultant, we made the decision that I would be the one to leave my career of 14 years in—ironies of ironies, clinical research. The repercussions of that decision were not evident at the time.
We had to purchase a $400-a-month private insurance plan to help with medication costs. But with our income now nearly cut in half, the drug plan, 2 cars, a mortgage, co-payments, and non-prescription medications it was clearly not enough to cover the bills. Eventually, my husband was forced to leave the job he loved to find one with benefits as our private plan would no longer cover Matthew’s—now—pre-existing condition.
Matthew's daily drug regime includes the short-acting brochodilator salbutamol that deals with muscle constriction, the corticosteroid fluticasone (now in a combination drug with a long-acting bronchodilator) which helps reduce the swelling of the mucous membrane and Singulair, a specialized anti-allergy medication. Any additional prescriptions from hospitalization—like prednisone or dexamethasone—are added to his daily regime. Moreover, his normal regime use spikes as well!
Matthew has been in the emergency room so often you lose track. When you add non-covered medications such as Benadryl or seasonal allergy pills it's easy to see that our drug costs can look like a second mortgage.
But fate was not done with us! Our daughter, Michelle, who often acts as both Matthew’s advocate and crisis support was diagnosed with anaphylaxis toward both latex (often in ER rooms) and—to add insult to injury—salbutamol. The very drug that Matthew needs in emergencies. Sigh.
Managing our life has enough challenges! But, no one should also be forced to fight this hard for drug coverage and co-payments are just a tax on the sick.