Unaffordable Health Care – Muriel’s Story

Before the Affordable Care Act (ACA) and in the subsequent partisan battles over Obamacare, there has been one constant point of agreement between Republicans and Democrats. We all want a healthcare system that supports families hit with a catastrophic medical diagnosis.

Last Thursday I interviewed a representative of that class, Muriel Tingley-Turner, for my Better Health podcast at SpokaneTalksOnline.com. It was one of our best interviews ever. Unfortunately, we lost the recording due to technical difficulties. Like technology, sometimes our health is not under our control. That’s where we started the interview.

Muriel is a former classroom teacher, mother of five daughters, active in a home schooling cooperative, and works in a small business. She is grateful to have had private health insurance at the time of her diagnosis with a rare cancer, a condition that has roots in a genetic anomaly and not anything she could have controlled with diet and exercise. There are no fingers to point here. Muriel’s is the classic worst case scenario, the kind where we expect health insurance to protect us. But does it?

After the diagnosis, Muriel started cancer treatments. She was one of those who found her health insurance policy and access to her doctors impacted by the changes mandated under the ACA. It took many hours on the phone with the insurance company and her healthcare providers to keep her treatment on track even when she couldn’t keep her doctor, an additional stress at a critical time for a healthy outcome. Thankfully, the cancer is in remission at this time and now attention turns to keeping it that way.

The new insurance system agreed a second opinion was in order after the first round of treatment. Most qualified health plans will cover the cost of a second opinion. Not only does it benefit the patient by leading to better outcomes, it often benefits the insurer by reducing costs. In Muriel’s case, the specialists for her condition were located at the University of Texas in Houston. They recommended a stem cell transplant as the next step, to be performed by specialists in Seattle. The cost of travel was on her. Travel is just one of the costs of healthcare that we often overlook.

This is a common dilemma for patients with an uncommon or difficult condition. Every hospital, every clinic, cannot be a specialist in every condition. It makes sense to centralize some kinds of services where doctors can see enough patients with the same problem in order to get really good at diagnosis and treatment. In medicine as in so many endeavors, practice makes perfect. Many times these specialists are out of network, although insurance companies can be persuaded to cover at least some of the costs.

When we talk about healthcare costs, we often focus on the insurance premium. Savvy consumers dig into the deductibles and co-pays when choosing a plan, but still aren’t seeing the whole picture.  Muriel was grateful to her son-in-law for making her sit down and develop a budget for all the costs she should expect. In addition to the trip to Houston, there would be the cost of temporarily living in Seattle as required for the stem cell transplant protocol. Travel, housing, copays, deductibles and home care is anticipated at $32,000 to $36,000. It is a hard number to face at a time when she is also facing long term unemployment while receiving and recuperating from treatment.

The ancillary costs add up quickly. Will treatment reduce your immune system’s capacity? Then you’ll need to pay someone else to care for your house, garden and pets. Muriel is blessed with five capable daughters old enough to help; she can’t imagine what someone in her position would do with toddlers. In any catastrophic illness, the indirect healthcare costs plus the deductible plus any co-insurance requirements still threaten people with medical bankruptcy. Family, friends and fundraisers provide the safety net.

I became aware of Muriel’s story after seeing a Facebook post about the trip to Houston for consultation. Not having much money myself, I offered her this forum to describe her situation and make a pitch for some of the fundraising efforts underway on her behalf.  If you feel inclined to help out with even a few dollars, you’ll find a Go Fund Me campaign at http://www.gofundme.com/u5bh2k for Medical Expenses for Muriel. Another opportunity will be a pass the hat celebration and send off for stem cell treatment, organized by Muriel’s Irish step dancing community and set for Thursday, June 4th at O’Doherty’s Irish Bar and Grill in downtown Spokane (check out the link here https://www.facebook.com/events/445611275600574/ ).

There are currently 274 campaigns in the Spokane area on the Go Fund Me system in the category of Medical Expenses. While raising the numbers of people with health insurance was a laudable goal, the Affordable Care Act didn’t focus on making health care more affordable or provide additional tools to help families better prepare.  Deductibles of $5,000 per person or $10,000 per family are common, and ordinary middle class families don’t commonly have $10,000 in the bank.  One of Muriel’s fears is how to face paying that deductible every year as her treatment post-transplant hopefully turns from acute to chronic. Go Fund Me is not a long term plan.

As we continue the dialog on reforming healthcare reform, we have to start on common goals. How do we provide a safety net for those hit with catastrophic medical bills? Encouraging pre-tax savings in Health Savings Accounts for the holistic costs of healthcare is one approach, rather than tying HSAs only to the so-called high deductible plans. In the case of a catastrophic diagnosis, the ancillary costs will always exceed the deductible. And even a healthy HSA can be drained if a condition requires ongoing treatment; how can we most fairly and sustainably manage long term treatment costs?

At the close of the interview, I asked Muriel if she had any advice for people as they evaluated their health insurance options this year. “Don’t assume you’ll never have to use it,” she replied. We like to  think of ourselves as invincible, but someone will draw the short straw and it might be you.

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2 Responses to Unaffordable Health Care – Muriel’s Story

  1. Erin says:

    Thank you for sharing her story! You mention what it would be like for someone with toddlers instead of capable young ladies, and I’m in that situation. I’m Muriel’s niece and I have a disabling chronic condition and four young children. I’ve read about some care models in other countries that seem too good to be true. I wish we could get even half as much care. I even read of one country who took money away from the foster care system to hire caregivers for children of disabled parents so they could prevent sending them into the system in the first place! But still, I’ve had to make the choice to leave the only doctor who really took my condition seriously because I couldn’t afford the trip to Seattle twice or three times a year. Here’s hoping things start to improve and soon.

  2. slmadsen says:

    We need to be thinking about what a 21st century healthcare system should look like. That includes acknowledging the benefits of centralization of treatment for unusual conditions and the dispersal of treatment and follow up when feasible (perhaps using telemedicine) to cut down on out of pocket travel costs and family disruption. This is an issue particularly in rural areas, where too much centralization can seriously impact access to care and compliance with follow up.

    We no longer have platoons of spinster aunts without options as our home healthcare workforce. This is another area where we need to think about sensible, affordable options. Sometimes it’s not about starting a new program but about removing barriers to creative solutions.

    Thank you for commenting, Erin, and I hope you see improvement soon too.

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