One battle won in cancer fight, but experience provides a bit of advice

“The pen is mightier than the scalpel.”

That was how a doctor at MD Anderson responded when I e-mailed him about a positive development after Sunday’s column on my dad’s struggle to get an insurance company to approve the cancer care he needs.

“We’ll need both,” I wrote back.

The real battle, against my 69-year-old father’s advancedstage lung cancer, still awaits. But many of you — including those who emailed offering support and prayers — will be glad to know on Tuesday we got great news.

My dad has been cleared to be treated at MD Anderson; the contract holding things up has been signed.

“It’s in my hot little hands,” a managed care specialist at the hospital told me.

“That’s the best news I’ve heard in years,” my mom said in the background when I called Dad in Seguin..

He sounded relieved. The day before, when I gave him a headsup that it was likely to happen, I asked how he felt after all these weeks of waiting.

“I feel a whole lot better now,” he chuckled.

Now, it’s full speed ahead with appointments and tests. And I’m shopping for a comfortable bed to replace the not-so-luxurious futon my parents normally get when they visit.

I know we probably wouldn’t be at this point today if a friend had not suggested I write about dad’s ordeal.

There were other efforts in the works, including MD Anderson staff reaching out to Humana contacts in other regions for help. But I think the column was key, especially since it was shared so widely on social media, often accompanied by @Humana’s Twitter handle. Apparently, the sticking point — an employee who did not understand a routine procedure — was easily resolved once the right people got involved.

But not everybody has a newspaper columnist in the family.

So what can you do if you hit an apparent dead end with a hospital or insurer? Here’s some advice from experts and from

my own experience.

Be persistent

It’s the most cliché advice but it’s also the most important. The first financial person I talked to at MD Anderson was not optimistic about dad’s chances of getting his Medicare Advantage HMO plan to approve out-of-network, out-ofregion care at the nation’s top-ranked cancer hospital. She told me it would be a tedious, frustrating process and she was right. But we cleared several hurdles — including overturning a denial — with constant calls — from us, from doctors and from other medical staff.

Jason Bohmann, a Houston-area insurance broker, said it took him about a decade to truly understand the power of not giving up.

“I know it’s one thing to say it, but you can kind of get ground down,” he said. “Truthfully, you just literally have to be committed to calling until you … get lucky enough to be connected to who says ‘oh yeah, there’s a solution to this.’”

Persistent doesn’t mean being unpleasant, Bohmann said: “I’ve never seen a situation where just being mean and nasty has ever worked.”

He says successful clients calmly counter a “no” with something like: “I understand you’re doing your job. But I’d like to talk with your supervisor.” Some use logic: “I will consume more of your company’s time and resources than it would cost for you to take care of this.”

Delegate

My dad is a wonderful man, but he’s not assertive. He’s a straight-forward, responsible person who does what he says he’ll do — and he assumes others operate the same way. But even well-meaning people in large bureaucracies get busy and overwhelmed. Things slip through the cracks.

My dad had a daughter with reporting skills, a flexible schedule and understanding bosses. He let me take charge. If you have a similar resource, use it. Delegating can take a great deal of stress off the patient, who should be focused on health and treatment. But your representative should be someone you trust, as you’ll have to give written or verbal consent to waive privacy rights to allow the delegate access to health information.

Consult an expert. Then become one.

Think you’re the first person who’s ever been in this situation? Somebody else has been there, done that, and written a book on it. Scour your contacts and see if you know one of them. Research online for support groups, sources in news articles or advocacy organizations that can provide guidance.

One of my first calls was to Bohmann, who doesn’t handle Medicare plans, and referred me to Mitchell Jerome, an agent who does. I was so clueless when I first began this journey that I thought Medicare was Medicare, that coverage on something like cancer was the same. Wrong! Jerome explained that some lessexpensive Advantage plans are managed by HMOs, which limit the doctors and hospitals covered. He laid out options: if my dad moved in with me in Houston, for example, he could immediately choose a new plan in the new market. The great thing about consultants like Jerome is their services are free to patients; they get paid by insurers. He says 65-year-olds transitioning to Medicare for the first time are putting themselves “in harm’s way” if they don’t use an agent.

Another expert in my Rolodex was Holly Wallack, a now-retired consultant in Florida who specialized in hospital billing problems. She recommended asking for detailed itemized bills before leaving the hospital.

“My biggest secret: You never call the number that’s on your bill,” she said. “You call the hospital, and you call the executive office. You ask the secretary, who’s very smart or she wouldn’t be there: Who is it who’s able to discount my bill significantly?”

She said front-line representatives can reduce bills only by 10 percent, maybe. But higher-ups have more authority, and may be willing to exercise it if you’re polite and straight-forward about the situation. Something like this, Wallack suggested: “I’ve got a $20,000 bill. I’ve only got $9,000. What can we do?”

For people who cannot afford a consultant, Wallack recommended a group called, Alliance of Professional Health Advocates, which helps patients with myriad issues. The website is http:// www.aphadvocates.org/.

Think outside the box

Call center representatives are trained to stick with the most rigid interpretation of the rules. It’s up to you to find another path. You can share your problem on social media, and try to bring it to an institution’s attention using official handles such as @HelpHumana or @AskUHC for United Healthcare. One Houston reader wrote he once drove to the insurer’s office “and made that person look me in the eyes and turn me down. … Thank God he blinked.”

You can also scan your Rolodex, church directory, or family reunion invite list for anybody who might know somebody who can help. It’s sort of like the game Six Degrees to Kevin Bacon — only with a purpose. If nothing is working and your case is unusual, outrageous or particularly compelling, you may consider writing or calling a reporter. Of course, the best way to avoid a situation like my dad’s — having to appeal to an insurance company to approve an exception to its rules — is to not need the exception in the first place. I asked my dad what he’d learned from the experience. “Get better insurance,” he said. He could have afforded a more expensive plan, but he was healthy all his life and opted to save money. I’m sure he kicks himself for that every day. No, access to the right cancer care shouldn’t be limited to a select few with the best insurance.

But right now, that’s the general rule. And trust me when I say it’s a rule pretty hard to get around.

Think you’re the first person who’s ever been in this situation? Somebody else has been there, done that, and written a book on it. Scour your contacts and see if you know one of them. Research online for support groups, sources in news articles or advocacy organizations that can provide guidance.