Monthly Archives: July 2017

Postcard from the Danube

danube-river-cruise I thought that once my disease was under control, once I found a drug that was working I’d relax and get back to enjoying life.

So why am I so anxious all the time? I think, in part, it’s because now that I realize I’ll be living longer, I need to find a way to finance my existence.

Anyone who’s been through cancer treatment can tell you, it takes a lot out of you. Between the drugs and the doctors appointments and continual tests and scans, not only is it expensive, but it’s time consuming.  So I’m looking for a way to make money that doesn’t take so much time or startup money.

A Facebook ad about a course teaching how to sell on Amazon caught my eye. My husband and I both went to the free workshop, then the paid training. Today, I mailed off my first four sales.

I can’t say we’re raking in the money yet. But I’ve talked to enough people who have that I’m starting to see a light at the end of the tunnel.

I admit, I’ve still got a lot to learn. As one of my mentors – Patrica Jones, whose story I’ll tell tomorrow – shared, it’s not unreasonable to start out losing money before you make it.

“Don’t worry about the money,” she told me. “Worry about who you’re going to serve and how it will benefit them.”

And know your “why?” she said. Hers is freedom and serving. Mine is being able to relax knowing I can pay off whatever debt this illness throws my way. It’s also about sharing my story with others in hopes that there’s some universal lesson that can save them the suffering and agony that I’ve been through. (What is it the Buddhists say? Pain is mandatory, suffering optional). Well I’ve had enough of both for a lifetime.

What will I do with my newfound wealth? My husband wants to take a blues cruise down the Mississippi River. I want to cruise the Danube River. I’ve got pictures from the cruise brochure pinned up in a shadowbox across from my bed, along with million dollar bills (fake, of course) to remind me each morning when I wake up where I’m heading, what this journey is all about.

I’m looking forward to the blog post I’ll be writing in the future, a postcard from Budapest perhaps with a note to all of you saying “Having a great time floating along the Blue Danube (which surprisingly isn’t blue). Wish you were here.”



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pay off $1 million medical debt


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Resources for getting out of medical debt

Here are a few resources I recommend or have been recommended to me by others who have had success.

NEGOTIATING TIPS: – A great piece on what to question and how to do it. – Gives a short synopsis of different financial assistance programs and who to call. – Good explainer on patient advocates and mediators, how they work, what they cost or how they’re paid.


In addition to elected folks, consider calling your county’s Consumer Protection agent or your state Attorney General to find out if they can help, particularly if you think some of the charges are excessive. Both can help you familiarize yourself with state laws that protect you.  Your best bet is to Google them. These resources can help you find your elected representatives. – This site will let you plug in your info, then find your state legislator’s contact info. – Another site like Common Cause. Seems a bit simpler to use. – An explainer of what help you can expect from your elected officials and questions to ask.

PATIENT ADVOCATES: – A good friend of mine used this woman, Laura Todd, successfully. She has an ebook on how to win an appeal, plus will help filing if you need her. Her Web site says she’s won 177 appeals so far. – I love this group. This is the Web site of the national organization. From there, you can search for a local chapter. They hold all sorts of seminars and workshops on everything cancer, including how to pay for it. Worth checking out. – If you live in Central New Jersey, here’s the link to the local chapter of the Cancer Support Community. – This is a page on Living Beyond Breast Cancer’s site (another group I love) that offers some great resources, including organizations that will help pay.

FINANCIAL ASSISTANCE: – This is the site for the Patient Network Assistance Foundation. I admit, I don’t know it and only came across it while doing research this week. The American Society of Clinical Oncology mentioned it in its financial toxicity study. It seems to have a lot of great resources. – This is the Web site for the American Cancer Society. It can be a bit tricky to navigate and sometimes frustrating, but when you find what you’re looking for, it can be gold. The link I’ve provided here will take you directly to the financial resources page which lists programs available in your zip code. ACS also provides reimbursement for travel to and from treatment, something I intend to look into. – In addition to programs for paying medical bills, many pharmaceutical companies are offering co-pay assistance programs to offset the high price of drugs. I can tell you, this is saving my life right now. My drug costs are close to $10,000 a month. Luckily, I’ve been able to take advantage of a Novaritis assistance program which covers the entire co-insurance cost of one of the drugs I’m on. The Web site above is a clearinghouse of programs. – A clearinghouse information site that offers info on financial assistance programs and clinical trials, which costs are often paid by the researchers. – Information on a federal assistance program that’s available based on income.

Are there resources you recommend? If so, please leave them in the comment section below. Thanks!


10 steps for paying off $1 million in medical debt

I’m sure I’m not the only one to find that beating (or stabilizing) a deadly disease is only half the battle. Paying for it is the other half.
After shattering her ankle in a fall down the attic steps. Tina Jordan faced $1 million in medical debt beyond what her insurance company had paid out. Below are the steps she took (and recommends) to climb out of that debt and get on with life.

1 First, keep a binder with all the bills, insurance claims, receipts, etc. When you call someone, make a note of their name and day of call right on the bill “I would write I talked to X on this day and they said do this,” said Tina. Take copious notes!
2 Explore every option, not just talking to the billing office.
3 Speak to the social worker at the hospital. They’re usually full of good information, such as where to apply for assistance or other places to look for help.
4. Contact your benefits person through your employer or insurance agent. Or ask if the insurance company has a medical advocate who will help navigate the billing process.
5. Write a letter to the doctor or hospital asking for debt forgiveness or a discount. “Asking people to discount the bill did work,” said Tina.
6. Hire a mediator to go over bills, look for errors and negotiate directly with the medical provider.
7. File appeals with your insurance company. Once they’re exhausted, see if your state’s insurance department offers an appeals process.
8. When all else fails, contact an elected representative. “My state rep was most helpful,” said Tina. After working together, her state rep actually got legislation passed outlawing “balance billing” which allows medical providers to bill patients if they charge more than the contracted rate allowed by the insurance company.
9. Ask everyone you know if they know anyone who works in medical billing who can make sense of the bills and offer ideas for getting fees waived or discounted.
10. Push through the fear and make the necessary calls. “I would vow to make one call a day. It seems daunting, but chip away at it,” said Tina.

How to pay off $1 million in medical debt

paying off medical debt   After two months in the hospital and a month in rehab for a shattered ankle, the result of a tumble down the attic stairs, Tina Jordan was home recuperating on the couch when the bills started pouring in.

“I started to put them in a binder. Before too long, I was looking at $1 million,” said Tina. That was in addition to what was paid by two “gold-plated” health insurance plans she and her husband had through their jobs.
Panic set in, she said. But with little else to occupy her, the magazine editor decided to attack it with her journalistic skills, researching options and reaching out to decision-makers.
“I had nothing else to do. I was lying on the couch with my foot up. I called the insurance company to find out how the appeal process worked,” she said.
Her first appeal was denied, as was her second and third. Panic turned to frenzied fear.
“They said the third appeal was the last, but that wasn’t true,” she said. New York, like many states, has a state insurance department that offered an external appeal process.
“I had to appeal every bill,” she said.
She reached out to her elected officials and found a sympathetic ear in her state rep. She hired a mediator to scour the bills for errors.
“He found a ton, all in my favor,” she said.
She wrote letters to her doctors, asking them to forgive the debt.
“That worked with some of the doctors, actually.”
And she applied for financial assistance offered through the hospital, which she surprisingly qualified for, even though she and her husband make a decent combined salary.
“After not sleeping because it’s so stressful, most of the external appeals were settled in my favor,” she said.
Still, she wound up paying $40,000 out-of-pocket. “But not $1 million,” she said.
“What if I were old, really sick or English wasn’t my first language? Hospitals gouge people with insurance, sending them bills and hoping they’ll pay without arguing,” she said.
She advises anyone facing large medical debt to have a good system for keeping track of bills, find a patient advocate or benefits provider who can help, talk to the hospital social worker and “explore every option, not just talking to the billing office.    Write a letter to the doctor. When all else fails, contact an elected official. My state rep was most helpful. She has a reputation for being diligent and caring and has a great staff.
Take copious notes and make those calls. It seems daunting but chip away at it. I vowed to make one call a day,” she said.

The high cost of the Whack-A-Mole Disease

medical debt   If I haven’t said this before (truth is, I probably have) let me say now. Cancer is a Whack-A-Mole Disease.
Just when one part of it comes under control, another aspect arises. In my case, the drugs I’m on are working to keep those rogue cells in check (good) but I’ve now got huge medical bills as a result (bad).
Part of the issue is the way Memorial Sloan Kettering chooses to bill my treatment as an outpatient procedure (which rakes in more money for them) rather than a doctor’s visit (which would only cost me $50).
That’s the problem with healthcare, you can’t really “shop” around for the best price. There’s no menu with options and costs. Instead, you go to your appointment, believing you’re going to be billed a $50 co-pay only to get a bill that has several zeros at the end (not including decimal points).
When I called billing to complain, I got a standard reply. “That’s how we bill it.  You’ll have to check with your insurance company.”
I’ve called my insurance company, my insurance agent and a third party vendor that assesses insurance costs. All say it’s how the hospital is choosing to code it.
If everything stays as it is, I’ve just about blown through whatever money I had to spend getting into a clinical trial and I’m feeling panicked. With these drugs working, clinical trials are off the table. At some point they’ll stop working and, again, I’ll be looking to get into one, but I won’t be able to afford it.
Add that to the national debate going on at the moment about changing the Affordable Care Act which will also tie availability of treatment to my ability to pay. It’s a wonder I can sleep at night with the worry that’s consuming me.

I’m not the only one who feels this way. According to results released during this year’s American Society of Clinical Oncology conference, the top concern reported by melanoma survivors was  money, with 69% reporting that they were concerned about insurance and financial matters.  The study found that:

  • 57% depleted their savings
  • 20% borrowed against or used retirement money
  • 17% postponed filling prescriptions
  • 13% skipped medicine dosages at least sometimes
Those who experienced the most distress made less than $60,000. Forty-two percent said they could use financial assistance,  but only 28% reported that their health care team spoke to them about it.

So how do I choose to tackle it?  As my mentor, Tina Jordan – who climbed out of $1 million in medical debt. I’ll tell her story tomorrow – reminded me, “I’m a journalist. Let me approach this like a journalist.”
Last week, I went straight to the top. I wrote a letter to MSK’s CEO Dr. Craig Thompson. I explained the issue, included copies of the bills and a synopsis of my insurance plan. I’ve learned from experience that CEO’s will direct it to the attention to someone at the top of the food chain, the vice president of billing most likely. Someone who has a different answer than “that’s just how we bill it.”
Tina gave me some ammunition as well. There are consumer protection laws in New York that prevent hospitals from “balance billing” which means coming after patients for more money than what they’ve agreed to pay based on their insurance contract. I’m keeping that info in my back pocket.
My goal at this point is to negotiate a discount so I’m paying what I thought I’d be paying. If billing won’t work with me, then I’ll apply for financial assistance. Tina did. She said even with gold standard health insurance and the lucrative jobs she and her husband had, she did qualify. That’s encouraging.

I don’t know how long it will take to resolve this. Already I’ve enlisted the help of a patient advocate offered up my my insurance agent. She’s survived Hodgkin’s Lymphoma, so she knows the deal.

I also look at it this way. As long as I owe Memorial Sloan Kettering money, they have skin in the game to keep me alive and well. In this, I’m hoping for a happy ending.