If you follow my Blog you are well aware that I had been doing my own bladder instillations at home for some time until the chronic UTI problem reared it's ugly head and lasted 4 long years! I long ago stopped doing my own instillations at home because of this while my doctor and I worked very hard to get this infection problem under control. This took patience, perseverance and time but we seem to be winning the battle as I have been infection free for close to 6 months (one more week!); this is paying off big time!
Things have been going so well the last time I saw my doctor he asked me how much benefit I was getting from coming into the office once a week for my instillations. I told him they helped a lot, but a week in between is really pushing it and that I wished I could do them more often but that there was no way I could handle driving an hour to/from his office to get them twice a week. So we talked. He asked if he approved me doing an instillation once a week at home, would I be ready to give it a try? I said yes. I told him I really missed having the ability to do them at home and if we started slowly, I would be up for it. So we agreed he would be happy to prescribe this for me.
Next hurdle. I am now on Medicare since going on Disability. When I was doing them at home before, I was still on private insurance and my private insurance had what is called a "Specialty Pharmacy Division" that handled these types of unique prescriptions. I had to buy certain supplies that weren't covered but I got all my meds shipped to me for 90 days and just had to pay my co-pay. So now that I am on Medicare, I had heard all sorts of stories from others that Medicare doesn't cover at home instillations, so I was not optimistic about getting this approved.
But I am a researcher, as many of you know, and I am willing to take the time to dig deep, ask questions, not take the first no for an answer and keep at it before I give up. So today I got on the phone and called my Medicare Prescription Drug Plan and started digging.
Here's where the research, patience, perseverance and time paid off. It took digging through three layers of people on the phone before I discovered that, YES, my Medicare Prescription Drug Plan DOES indeed have a Specialty Pharmacy division! YAY!
I was connected with the nicest, most patient woman in the Specialty division who was willing to work with me, unravel what it takes to put together everything necessary to do an at home instillation and what supplies were needed. I was on the phone for over an hour as she looked up medications, figured out coverage and co-pays. She even went the extra mile when the computer was telling her I would have to pay cash price for the 60ml syringes and the regular needles required to withdraw all the meds out of the vials they come in. She told me that didn't seem right since I was a Specialty customer and this was clearly a specialty prescription so she put me on hold to look into it further. Low and behold, her taking the time to research these items further meant she was saving me over $80! They were in fact items that should be provided free of charge to me because it is a specialty prescription and so I do not have to pay for these two items! Again, patience, talking with her about this, her willingness to go the extra mile because of a little prodding from me on this, and I am getting those two supply items for free! All my meds are covered and the one that wasn't covered, the retail price I have to pay is basically the same price as the co-pay would be (not even $4 higher), so I was excited about that too! All the time on the phone, being patient, willing to explain what I needed - it paid off big time!
So the moral of the story is the title of this post: Research, Patience Perseverance & Time can pay off big time! If you are considering doing at home instillations, it can take some real time, energy, patience and knowing the questions to ask. But if you are willing to do so, it can reap big rewards! This is true for just about anything when it comes to taking control of our IC and our treatment plan, working with our doctors, insurance companies, pharmacies, hospitals etc.
So if you persist, ask questions, don't just take the first no for an answer, you too could find it Pays Off Big Time!