Month 171– Preparing

In preparation for next week’s appointment with the urologist, I’ve put together a list of questions to bring with me. I’ve also done something new: I’ve emailed the questions to the office in advance of the meeting to hopefully make the most out of the time we have together. That, of course, assumes that the doctor will actually see the questions more than five minutes before walking into the exam room. We’ll see if it pays off.

I’ve also been preparing on another front, too.

As many of you already know, I have been receiving my care through the Veterans Affairs (VA) healthcare system since 2013. Of course, the VA is a government agency, and I’m growing increasingly concerned about this new administration’s slash-and-burn attacks on multiple government agencies all in the name of cost savings and “efficiency.” 1

The funding freeze that was put in place initially stopped hiring at the already understaffed VA, but enough people spoke out and exemptions for hiring certain key positions were allowed. I’ve also heard that the administration wants to review eligibility requirements for veterans to be able to receive care. This is of particular concern to me.

Veterans seeking healthcare through the VA are assigned to one of eight priority groups to be eligible for care. Priority Group 1 in the highest for combat veterans with service-connected injuries and disabilities; Priority Group 8 is the lowest group for eligibility. My time in the Persian Gulf for Operation Desert Shield earned me a place in Priority Group 6, more towards the lower end of the priority groups, perhaps making me more vulnerable to losing care should the administration change eligibility requirements.

Another proposal under consideration (and has been for years by some), is the privatization of VA healthcare. In other words, the administration would prefer to push 9.1 million veterans receiving care into the private, already overburdened, for-profit healthcare system. You know the one. It’s where insurance claim denial rates are approaching 30% or higher at some companies, and where an insurance company CEO was assassinated on the streets by someone disgruntled by the health insurance business (absolutely not condoning that egregious action).

Another concern is this administration’s assault on the LGBTQ community. We’ve seen the new secretary of defense ban one group from the community from serving, and it is within the realm of possibility that they could expand that ban to the entire community at some point in the future. Perhaps it would be expanded to the VA, too, and that would be another possible reason for me to lose my care. (The VA knows I’m gay.)

Given how quickly and how erratically things are moving, I’ve taken a few steps in preparation for possible loss of my VA healthcare. I’ve refilled my prescription early and I’ve downloaded my entire healthcare record—all 914 pages—before a certain billionaire’s hackers gain access to the VA computer systems and lock people out, as we’ve already seen happen at other agencies.

Am I overreacting? Who knows. We’re in tumultuous, uncertain times that none of us have ever seen the likes of before.

What I do know is that this draft-dodging president has disparaged and disrespected service members and veterans for a very long time, calling us “suckers” and “losers.” If he’s already cut off aid to starving children around the world by killing the US Agency for International Development (USAID), I wouldn’t put it past him to cut off healthcare to those of us he considers “losers.”

Please don’t say, “Oh, that could never happen.” They’re already looking at reducing veteran disability payments as a cost savings measure. Sadly, the majority party in Congress doesn’t have a single vertebra between its 53 senators and 218 representatives to stand up to the administration.

On the off chance that I do lose my VA healthcare, I do have Medicare to fall back on. But the administration has also set its “efficiency” sights on paring that down, too. Then there’s their long-standing desire to repeal the Affordable Care Act (Obamacare) without anything more than a concept of a replacement plan. (The ACA made it mandatory that pre-existing conditions be covered, an important consideration for cancer patients.)

Again, am I overreacting? Probably. But I do want to be prepared should the unthinkable happen and I lose my VA healthcare. If my preparations are for naught and I look silly, so be it. It wouldn’t be the first time. But I’m at an important juncture in my cancer journey, and I would want to make the transition to a new healthcare team as seamless as possible if I’m forced to do so. (Of course, I would dread the prospect of having to find a new primary care physician and urological oncology team from scratch. That could take months.)

We’re in crazy times. Let’s hope that reason takes over, calmer heads prevail, and that I’m wrong about all of this.


1 – Yes, there is waste in every government agency, including the VA, but there’s a right way and a wrong way to find and eliminate it. You don’t shut down the entire agency; you do a line-by-line audit of the budget and practices to see where the waste is. You also need to look at the downstream impacts before you eliminate the waste (e.g., U.S. farmers sold $2 billion in agricultural products per year to USAID to feed others around the world; now that market and that income for those American farmers is gone). Lastly, just because you don’t agree with a program that Congress appropriated funds for, doesn’t mean it’s waste or fraud.

Day 4,037 – Insurance Rationale

Over the weekend, I received a letter from my health insurance company explaining the denial of covering the cost of the PSMA PET scan. This differs from what the representative told me via email (UCLA didn’t send all of the necessary paperwork) and carries far more weight, as it appears that a medical review was done. The redacted section below is the name of my insurance provider.

In a nutshell, because my PSA is 0.22 ng/ml, it doesn’t reach their threshold of 1.0 ng/ml, they deem the scan “not medically necessary” and won’t cover the cost.

The insurance company may have a limited point in their comment, “Use of this study would [not] improve the outcome” with my PSA level being so low. Realistically, the chances of the cancer metastasizing while waiting for the PSA to go from 0.22 to 1.0 are miniscule—especially with my PSA doubling time—and the treatment options would likely be the same: Salvage radiation, perhaps with hormone therapy as well.

However, the insurance company is missing the larger point: The whole purpose of having highly sensitive, highly specific scans like 68-Ga PSMA PET is to locate cancer early so that you can come up with an effective treatment plan that hopefully does, in fact, have a positive impact on the outcome and survival.

My urologists were supportive of getting the scan, so I’ll see if I can’t get them to help convince my insurance company through a formal appeal that this is, in fact, medically necessary.


As far as the scan itself, it’s less than 24 hours away. UCLA Department of Nuclear Medicine did remind me that I have to fast for at least six hours prior to the scan, drinking only water. No juice, no coffee, just water.

I’ll let you know how it went.

Be well!

Day 4,034 – Insurance Challenges

The administrative challenges continue…

On Tuesday, UCLA called to confirm my PSMA PET scan next week and, during the call, the said that they had not yet heard from my health insurance company as to whether or not they would cover the cost of the scan. She asked if I wanted to proceed next week, paying the $3,300 myself, or delay until the insurance was settled. If I delayed, the next available appointment would be in February 2022.

I told her to keep next week’s appointment and that I would battle it out with the insurance company after the fact.

On Wednesday, UCLA calls saying that my insurance had denied the request for the scan and wouldn’t cover the cost. Again, I reiterated that I would keep the appointment and pay the cost myself.

But I was curious about the reason for my denial, as I had an email from my health insurance company earlier in the year indicating the values that they would pay for each of the CPT codes that were given for the scan, so I emailed them again (after trying to get through on the phone on the day before Thanksgiving failed).

I was actually surprised that I received a response this morning that read:

I accessed your account and I see that the pre-approval was denied because of insufficient medical records was [sic] provided from the provider. I request you to please ask the provider to call…and verify the documents needed to submit for prior authorization then send the documents so that we can approve it.

Of course, UCLA is closed for the holiday weekend today, and I’ll have to just try to get them to get this taken care of on Monday when I go up there.

It’s always something.

Be well.

Month 75 – Distracted from Cancer

It’s good to be distracted. I’ve barely thought about prostate cancer since the holidays, and that’s been fantastic. What’s not fantastic is the reason for the distraction. One word: Trump.

I’ll not turn this into a political blog, but suffice it to say, I’m not a fan. But, seeing as the repeal of the Affordable Care Act (ACA) is on the top of the new administration’s “To-do” list, some passing thoughts on the topic here are not out of line.

When I decided to leave my job five years ago and move from Indiana to San Diego (about 15 months after my surgery), my health insurance was intact through COBRA coverage. (For those readers outside the U.S., the Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985 gave employees who left their company the right to continue their health insurance coverage through their former employer’s health plan for up to 18 months after leaving.)

My COBRA coverage ended in September 2013, just a few months before the ACA’s requirement to cover individuals with preexisting conditions kicked in on 1 January 2014. I tried to purchase insurance on my own long before the September expiration of my coverage, but was told that I was uninsurable because of my prostate cancer diagnosis or, if they would cover me, the monthly premiums would have been north of $2,500 USD per month.

I’m a veteran of the U.S. Navy, so in May or June of 2013, I turned to the Veterans Administration (VA) to see if I would be eligible for care.

For those who don’t know, there is a tiered eligibility system in place to determine your eligibility and your level of care with the VA. Not all veterans will be eligible for care. Fortunately (?) for me, I served in-theater in the Persian Gulf during Operation Desert Shield/Desert Storm during the first Gulf War. That made me eligible for coverage under the VA, and it’s where I’ve been getting my cancer care ever since.

We’ve already heard discussions of lifetime caps on coverage being reimposed; debates over preexisting conditions; and a host of other changes that scare the crap out of most people, cancer patients in particular. The administration has already imposed an across-the-board federal government hiring freeze at a time when the VA healthcare system is struggling to provide quality care to all the veterans from the Iraq and Afghanistan wars, as well as to veterans like me. It’s simply bonkers (that’s a technical term).

So I’ll climb down off my soapbox now and thank the new administration for pushing the notion of cancer recurrence pretty much completely out of my mind for the last two months. There are bigger things for me to deal with than piddly little ol’ cancer.