There is no Plan B!

I’ve spent the last several weeks going round and round with my drug company, my insurance company, and the people who help with financial assistance at all of my doctors’ offices trying to get help paying for the drug that brings my sodium back up (Samsca). The retail cost for the drug is around $4,000 for 10 pills and as of now, the nephrologist wants me to take one every other day.

I started with the oncologist’s office, as he had assured us his financial person could help us. He was wrong. The only financial assistance she could find was for people who were uninsured. We applied anyway just in case, but our application was rejected. “Maybe the doctor could prescribe another drug,” she suggested. But there is no other drug for SIADH. I’m assuming that’s why the Samsca is so expensive.

Then one of my sisters found an application for a co-pay assistance program that said it would pay all but $10. That one sounded promising and I met all their qualifications. So I took the application to my nephrologist’s office and had them fill out the form and fax it with a new prescription. A few days later the office manager called to check on the status of my application. They said I had to be in the hospital to be considered for that program. Another dead end, at least for the time being.

Next I called my drug company. They told me I needed a pre-authorization, but once I was approved, I could get a prescription through the mail for $10. Another promising lead. So I called my husband’s union (they do our pre-authorizations and have thus far been extremely helpful). I was told they would authorize five more pills, but that’s all they will approve. Period. I told them if I don’t have the pills, I’ll have to go back to the hospital every other day and that would be way more expensive than the cost of the pills. They said this drug is not approved for long-term use by the FDA, so they can’t authorize any more than five additional pills. “You’ll need to ask your doctor to come up with a Plan B,” I was told. But there is no Plan B.

Once the five pills had been approved I got a call from the Wallgreens specialty pharmacy. They said they were ready to mail my five pills…for $900. I told them the drug company had said my cost would be $10. They said they didn’t know where that price had come from.

So I called the drug company back. They assured me the price was $10 and said they’d call Walgreens again. Walgreens still wouldn’t budge on the price.

Next, I called the Union hall back. The woman there got a supervisor from the drug company on the phone. She said she would call Walgreen’s herself and make sure I got the pills for $10. So after spending hours on the phone, I managed to get five pills. That gave me seven total with the two I had left from the first batch. Or enough for one week.

Whew! In the meantime, I got a call from the nephrologist’s office telling me my sodium was critically low (107). They sent me to the ER and I was admitted to the ICU. So instead of spending Thanksgiving with my dad and sister, I spent it in the hospital. I was there for a week, and some days I had to take a double dose of Samsca to get my sodium up.

Since I was in the hospital, I brought the paperwork my sister had found for the co-pay assistance program. Unfortunately, everyone decided to take a long holiday weekend, so I had to stay over to be eligible for assistance.

The case manager didn’t sound too optimistic. She said the woman she talked to before the weekend told her I might not be eligible because I’m insured, but according to their eligibility criteria, this program is for people who have private insurance. I asked her if she had any other programs we could try and she said she didn’t. “If this doesn’t work, your doctor might have to come up with a Plan B,” she said. THERE IS NO PLAN B!!!!

Toward the end of the day on Monday, the case manager came in and told me I had been approved for 30 pills. Since I had already had five in the hospital, I could get 25 more in the mail. Yay! But…”How much are they going to cost me?” I asked. She said she didn’t know, but she’d find out for me. When she came back, she said they would be free!

The pills came in the mail the next day. When I run out, I have to go back to the hospital and start the approval process all over again. That’s okay, though. I only take 15 mg every other day and the doctor ordered 30 mg tabs, so I can cut them in half and am good until after Christmas. Hopefully, the Keytruda will start working by then and I won’t need them as often. All of this just goes to show that persistence pays off.

Also, the oncologist said if the Keytruda killed a bunch of cancer cells at once, it would cause my sodium to plummet. So the sodium dropping when it did may be a good thing.

Today, I had another surgery to dilate my esophagus (#7). Thankfully, I’m not in a lot of pain this time. The surgeon said after the next one, I shouldn’t have to do any more surgeries for awhile.