Pharmaceutical Adventures

Regarding pharmaceutical costs.
I am on an oral chemo, after a week of oral and IV chemo initially.
I’m on day 21 of 28.

I am no longer on a hydration drip or any IV.

They draw blood daily and give me an oral chemo pill (Venetoclax) and a number of anti biotics/fungals/virals.

This could now be done outpatient.
Since last Tuesday.

A process was initiated to have the Venetoclax delivered to my house along with the others.

Then the negotiations began.

The hospital pharmacy provides me the Venetoclax on an in-patient but NOT an outpatient basis.

My stay in the hospital is paid for by the insurance similar to an all-inclusive resort.
Meals lodging, nursing, pharma, tests, etc. at one negotiated price.

When I go home, the meds are itemized and then it’s to be decided what is needed or paid for.

I submitted forms to the hospital to fill out for my insurance which they did and returned to the insurance.

The outpatient pharmacy for the chemo is in Indiana, part of the hospital system.

I was told they could not fulfill the Venetoclax until I was discharged and home an out-patient.

I cannot go home without the chemo being there.

Catch-22.

I was told that if the pharmacy calls, tell them I am home. Well, this has become a home away from home.

Each day I awaited the call.
It came Thursday.

It seems my insurance will not pay for the Chemo until I register with something called SaveonSP (https://www.saveonsp.com/).

My insurance did not tell me that, they told the pharmacy who relayed it to me.

I registered with SaveonSP over the phone and after a half hour of that, I was told I was approved.

My cost (copay) would be $4300, not applicable to my annual deductible ($5000)!

And this might be a repeating charge for the next chemo cycle of 29 days at home.

If that was the case, it would be cheaper for me to stay in the hospital under the all inclusive resort setup.

SaveonSP then told me that I should register with the manufacturer, as they offered a copay assistance plan, which only worked under certain circumstances (private insurance plus Medicare part A only). They gave me the phone number assuring me I qualified.

I spent the next half hour registering with that program on the phone. There were websites for this, but nobody told me that at the time.

At the end of that phone call I was told I was denied the copay rebate. They gave me a reference number and told me to contact SaveonSP again.

I did and I was told they had never heard of anyone being rejected like that and to call the copay assistance again.

I did and got someone else who started the process all over until I said that I had a reference number.

She looked it up and said that I had NOT been denied, but that my case was pending.

They needed my oncologist to call them.

I have so many doctors introducing themselves as my oncologist on a rotating basis, I was at a loss.

I think that was the crux of the denial/pending issue. They needed an oncologist approval.

My main point of contact has been a great PA throughout this process.

I talked to her on Friday and asked her to make the call.

She wasn’t sure she was the person to make the call, but couldn’t figure out who was.

So she finally called.

After that, the outpatient pharmacy called me and asked me some questions.

I told them the Catch-22 I was in and they didn’t care where I was. No Catch-22.

They told me the copay assistance was approved and that they were ordering the meds to be shipped to their Indiana office which would then ship them to my house. Drop shipping to my house would have been more cost-effective.

They may be there Tuesday and then I can go home a week early.

That wasn’t too complicated, was it?

That $4300 copay covered about 14 tablets. What the heck was the full price? Enough that the manufacturer could write off the $4300.

As for my health, there was this one incident when they left the drug locker open:

But it was minor and they had the narcan. 😁

The doctors say I am progressing well.
I've been allowed daily excursions to home for a few hours each day.
The issue is the low blood counts I have.
This means three things that I am at risk of because of the intended effects of the chemo:

1. Infection because of very low white blood cell counts.
2. Bleeding, because of low platelet counts.
3. Energy level because of low red blood cell counts.

I asked the doctor yesterday about the energy thing.
I used an analogy of a battery. 

My battery won't charge up to 100%. 

He said I have about 20% capacity.
This leaves me to tire easily. 

Daily, I take a hot shower. I notice my energy levels depress after these showers.
I normally wait a few hours before walking after showering.
Yesterday I took a hot shower for about 10 minutes and then dressed and went outside for a walk in the sun. 
As I walk, I often rest on a bench in the sun and catch the rays.
Yesterday as I talked on the phone on the bench, I started to pass out.
I've only done that once in my life (when no drugs or alcohol were involved) and it was in church as a kid when the temp was around 100 and there was no AC.
I made my way back to the room and called for the nurse to take my vitals: oxygen, heart beat, temp and blood pressure.
At this point all was OK, but the BP was a little low. 

I told all that to the PA today and was told that the heat can open blood vessels, lowering blood pressure and since I'm already low on hemoglobin counts, that's an issue.
It reduces blood flow to the brain.
Yesterday evening I walked quite a bit in the hospital. In the AC environment. No issues.

I've lost 20 pounds. Not in my belly, though. :(
I eat more here than I do at home and the food is ala carte if I like.
If I forget to place my order, I get the chef's special of the day. That's never been a bad thing.
I pre-order my meals and they are very good. Chicken/veg quesadillas, herb chicken, salmon, meatloaf, etc.

And the care is very good here.
Think the total opposite of Nurse Ratched.

I hate to bring it up here, but when I was on the IV chemo with IV antibiotics I experienced diarrhea for several days, but then it stopped.

All in all, I'm in God's hands, as always, and I appreciate prayer on my behalf.

Thanks for listening.