Well, I had a somewhat unpleasant day. Went back to work on icy roads and was greeted with a busy morning of walk-ins. Fortunately, my team pitched in and we made it all happen. Then, I went to the West Michigan Cancer Center (WMCC) to meet Ron for his oncology appointment over my lunch hour. We learned that he would not be able to get his injection, which he gets every four weeks, if he stayed enrolled in hospice. So, he had to revoke hospice and we are now back on our own. This was pretty devastating to me.
A bit of back story here, for those who may not know or who don’t follow Ron’s blog (which I really should link to this one). Ron’s neuroendocrine tumor, which began in his pancreas and metastasized to his liver, produces Serotonin and a peptide that cause him to experience a burning sensation in his stomach, as well as cramping and constant diarrhea. This is what initially caused him to lose all that weight that alarmed us and led us to finally seek help, in spite of lack of insurance. Once the doctors at U of M did the liver biopsy and ran blood work, they knew what was going on and that an octreotide injection would address the symptoms. Ron has his first injection while inpatient at U of M just over a year ago. Although the shot itself is extremely painful and often causes him to have trouble walking, the fact that it controls these symptoms and is only needed every four weeks makes it worthwhile.
It was without question to us that he needs this injection. There is no room to budge on this issue because life without it is unbearable for Ron. The octreotide is not going to cure him. They have all been up front about this from the beginning. But, it will control symptoms and make his life more comfortable. In my naiveté, I stupidly believed that since it was not a treatment that would prolong his life and was just controlling symptoms of the cancer that is killing him, for which there is no cure, he would be able to receive this injection through hospice as part of a holistic palliative care package. Once Ron decided to get on board with the idea of hospice, which took some time, since it is often viewed as a last resort or as a sign of giving up, we were both a little shocked to learn he could not get his injection if he enrolled in hospice. Medicaid will not pay for it for someone in hospice. And, the hospice itself, which is a nonprofit and can choose to pay for certain things associated with care, will not pay for it either. Perhaps this has to do with the fact that the medication costs about $5,000 per month . . . which gets me started on a few other rants that I will avoid for now. Anyway, we learned this in October and we gave up on the idea of hospice, deciding we would only turn to them at the very end, when all else fails and the injections no longer matter.
So, imagine our surprise when, just after Thanksgiving, we heard from Ron’s nurse at WMCC. She told us that she had contacted Novartis, the makers of Sandostatin, Ron’s octreotide injection. She said the person she talked to had assured her that once Ron enrolled in hospice, causing Medicaid to deny payment for the injection, and once the hospice also denied payment, he could apply for a patient assistance program through the drug company to cover the cost of his medication. We were so happy that she had done this leg work and that something seemed to be going right!
Based on this information, Ron enrolled with Hospice Care of Southwest Michigan on 12/7/11 . The staff people are all so friendly. We met two different nurses, a social worker, and the chaplain. We had 24 hour access to a live nurse. Within 24 hours of him enrolling, they had medical equipment delivered to the house, at no cost to us. This included a wheelchair that we had been battling with Medicaid to outfit him with since June. He was visited weekly by a nurse, who he adored, and she made frequent calls to check in with me and with him. His medications were delivered to our home. He was just starting to get linked with a volunteer and there were other services he would have access to, as well. It was like a dream come true. For the first time since his diagnosis last year, we felt like someone in the medical world gave a damn about us. Ron actually just blogged about how happy he is with hospice, what a weight has been lifted from both of us, and what a blessing it is to be involved in their services.
And then it all came crashing down today. His WMCC nurse called Novartis to confirm that they would cover the cost of his Sandostatin, which was due today (overdue by a week, actually, due to the holidays and he was having symptoms and desperately in need of it). Apparently, Novartis informed the nurse that they would not be assisting us after all. The person who said they would provide patient assistance had been wrong. They will not provide assistance to someone who is enrolled in hospice.
(insert my intense RAGE here – beyond words rage at the stupid systems in place to serve drug companies which fail the individuals who need care)
The only choice, at least for today, was for Ron to sign himself out of hospice. This means they will not be coming to our home anymore, providing volunteers and staff, or assisting us in all the big decisions we still have to make. This means they will have to take back the adaptive equipment they gave to him to use. This means we are once again all alone. Ron will have the opportunity to get back into hospice at a later time, but for now, there seems to be nothing anyone can do. I inquired whether anyone could call Novartis and try to talk to them, but it does not seem anyone will (maybe I will, some day, with all my free time – yes, sarcasm). For now, we are feeling abandoned.
I suppose this is no one’s fault, except for maybe the Novartis person who misrepresented that they would provide with such coverage in the first place. But, people make mistakes and even this I find myself forgiving. I want to be angry at someone, but I don’t know who. I just feel like the rug has been pulled out from under us. We had help . . . with hospice, for the first time in a year, we had help from medical professionals without having to beg or fight or feel guilty for asking . . . and then we lost it. It is like a warm hug, followed by a slap in the face. You are left in a state of shock, like you just watched an entire season of a tv show and got really into the characters and then learned it was all someone’s dream and none of it actually happened – leaves you kind of feeling ripped off. Maybe it would have been easier not to have known the beauty and peace and caring of hospice, only to have it yanked away.
Of course, it’s not over yet. Things change. Miracles happen. Maybe something will work out. Maybe I just will call this drug company and keep calling them until they shudder to hear my name and give up and just agree to help us out because it is the right thing to do. I am not entirely giving up on hospice. I anticipate they will be able to help us at some point in the future. I am just grieving the loss we experienced today with Ron having to sign himself out. And I am sad in general today. The doctor’s visit at WMCC was frustrating and discouraging to me overall, not just because of Ron meeting the hospice nurse there and prematurely, unexpectedly signing himself out. But, those frustrations and disappointments are for another post, because now it is time for bed.
To end on a positive note, I did experience gratitude for the following today:
1) Sunshine
2) My dog, Ru, “buffaloing” through the snow
3) Food Fairy from work who provided a taco meal
4) My brother, Dustin, and sister-in-law, Carrie, coming over this evening and lifting my blues a little bit
5) Another day of living with Ron Clark in my life
I am so glad that I read Wednesday's post before this one. How discouraged you must have been....
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