Wow. People actually read this thing . . . and respond. How cool is that? I am impressed by how many have come forward with ideas, problem solving suggestions, support, empathy, and willingness to help in any way they possibly can.
First things first. Ron’s hospice nurse called both Ron and I this morning to let us know she was trying to work some magic with the equipment situation, pending when Ron may be able to go back into hospice. So, for today and at least for this week, it stays. Additionally, she said we can call her anytime if we want to consult about things (she knows we will not be abusers of this privilege) and that she will still try to drop by to check on Ron if/when she is in our neck of the woods. Isn’t she a sweet lady?! We may not be formally involved with hospice right now, but we have not entirely lost all of that support, which feels a little nicer.
Second, about the equipment, I think we have this figured out, especially with everyone’s help. As I said, the stuff we have will stay for now. And, we do still have a wheelchair from Lending Hands (www.lendinghandsmi.org), which is a super neat organization that we turned to when Medicaid was first dragging their heels on getting him one and we needed it for our great Upper Peninsula vacation. We will have to return it in May and cannot have extensions past then, but for now, we have it. I was going to return it sooner, now that we have one through hospice, but given the events that unfolded yesterday, we should probably hang onto it for a bit longer. Ron’s mother was able to make some calls today to secure a cane and shower chair. And I have had other folks stepping forward about these needs, offering to look at second hand stores or speak to family about borrowing. So – the “stuff” part of it – no sweat. We will work that out. I think the hard part about losing the equipment provided by hospice, at least for me, is symbolic. Like, ‘Here, now you have our help’ and then ‘OK, now you don’t have our help and we are taking it all back.’ Like a friend who gave you a gift that you really treasured and then took it away when the friendship ended – it just stings a little. I knew that stuff wasn’t to keep forever, but I guess I had not envisioned it being taken back while Ron is still living.
For me, the real issue here is the concept of hospice and the people part of what they do. Nurses, social workers, chaplain, volunteers, home health aids, music therapy, massage therapy . . . losing access to those resources, and especially losing those resources being provided to Ron in the home, is a big blow to our sense of being taken care of and provided for in this universe. And, what I haven’t mentioned because it is dark stuff to talk about, but what I really needed from them . . . someone to help us plan for advance directives and a living will and to figure out arrangements for what happens after he leaves his body. All of that really final, horrible-to-think-about death stuff – that is what I had asked for assistance with from hospice. And they had not yet had a chance to help in those areas, but said they could – we were still waiting for that to come. There are a lot of big decisions to be made and Ron and I both feel more comfortable having a team of professionals who do this for a living standing by our sides and guiding us through the process.
Losing hospice is not something that feels good right now when there is still so much in the air. Tangible equipment, we can figure out. Hands on care in the home – not so much. Final decisions and arrangements – not so much. But, how do we keep that service when we are being told that if he has it, he cannot have an injection that allows him to live without burning pain, cramping, and diarrhea (basically, zero quality of life)? This morning, I pondered ‘Am I asking for too much? Is this like having your cake and eating it too?’ And then I thought, ‘This is ridiculous. No, I am not asking for too much! If I were having my cake and eating it, Ron would not be dying and we would be sharing a long life together.’ All I am asking for is for support for both of us and comfort for him. Surely that is not too much to ask, given the circumstances we are already up against.
The third, and most important update: When I got home from work, I called Novartis, the manufacturers of Sandostatin. I also invited those on Facebook to call them, too, and plead our case. But now you may not have to. I spoke to a nice representative named Jason. I explained the situation: Ron wanted hospice, learned Medicaid would not cover the shot if he went into hospice, but then the oncology nurse called Novartis and was told he would qualify for patient assistance once Medicaid and hospice denied the shot. I explained that it was with this understanding that Ron enrolled in hospice and articulated what a slap in the face it was that they denied his request because he is in hospice when the nurse specifically called them about this very thing. I also pointed out that nowhere on the application or website did it ever mention that hospice was an excluding factor (thanks, KS, for reminding me of this fact today!). Jason did a fine job of validating my frustrations, like any good representative should. He explained that the oncology nurse somehow got routed to the wrong patient assistance phone line and said that the representatives at that number had not been “schooled” about the hospice rule. He said it “happens often” that someone is told yes when they should have been told no. He apologized for the misinformation. He agreed that the website and application do not spell it out specifically and admitted that they should.
Jason explained to me that the two main reasons why they do not approve patient assistance for individuals in hospice are, 1) they are under the assumption that hospice patients cannot get to a doctor’s office to receive the injections - which require very special storage and preparation and cannot be administered at home, and 2) they are under the assumption that hospice pays for the medication. I advised Jason that Ron could, in fact, get to the doctor’s office to get his shot (at least for now) and that Ron’s hospice told us they would not pay for the injection. Jason did some consulting. He then told me that we should resubmit the entire application, but to include an appeal letter, a letter of payment denial from Medicaid, a letter of payment denial from hospice, and a letter explaining that Ron will be able to go to the doctor’s office for his injection. “Jason,” I asked, “I want you to tell me honestly, because my hope just went up, how often do these things actually go through?” Jason responded that as long as all the information is all there, we have a pretty good chance. He said the more information/proof we provided, the more likely the appeal would go through and the decision would be overturned!
Well, I ran some circles around the living room and jumped up and down several times, quite proud of myself. Why none of Ron’s health professionals could talk to Novartis and figure all of this out yesterday is beyond me, but who cares? It is good news and I will take it!
Now, I just need to get all this crap together that they need. I left voice mails with the hospice and oncology nurses, pleading for assistance in getting the appropriate letters. I am sure they will help. If this goes through, it means that Ron can have both – a shot that allows him to live a closer-to-normal/less painful life, and a hospice community that cares about us and provides help in all sorts of ways. And, why shouldn’t he have both of those things? After all, it is not like we are asking for too much . . . just less painful days for the life he has left while also being supported and cared for. Shouldn’t we all be entitled to that?
Oh, Heather, I hate that you have to jump through so many hoops to get what you need. You are one strong woman!
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