Real World Health Care Blog

Tag Archives: treatments

Speaking Up: Let Patients Have a Say

One of the main tenets of patient-centered care is giving patients more control over their health and health decisions made on their behalf. Patients have a clear and important role in their own care through a concept called “patienthood” — the self-management behavior that ensures we either give to ourselves or get from others the care we need to manage our health risks and medical problems.

Linda Barlow

Linda Barlow

On the surface, patienthood seems like a simple concept: our body, our health, our decisions. What might be right for the patient next door may not be right for us. At one end of the spectrum, patienthood may involve strategies like eating right and exercising to avoid problems related to obesity. At the other end of the spectrum, it may involve saying “no” to certain suggested treatments, as I did when I opted not to have chemotherapy after my breast cancer operation.

According to a report from Kaiser Health News, in many hospitals and clinics around the country, health care professionals simply tell patients what treatments they should have, or at least give them strong recommendations. But at UC San Francisco, a formal process called “shared decision making” allows patients to work with doctors to make choices –regarding their care. The approach has become a model for other programs around the country.

The report mentions a stumbling block to this approach: many patients aren’t accustomed to speaking up. Even the most engaged or educated patients may defer to their doctors because they are scared, they don’t want to be seen as difficult or they think the doctor knows best.

Doctors who recognize this stumbling block may want to take a cue from one family doctor profiled in the Washington Post who, when faced with a medical conundrum involving an elderly patient, pushed aside talk of possible treatments and asked the patient a simple question: “What are your goals for care, and how can I help you?”

This particular patient wasn’t looking for a cure. He simply wanted to live out his remaining days at home without worrying about falling. So the doctor put together a hospice and physical therapy plan that let him do just that.

Patients speaking up. Doctors asking the right questions…and listening to the answers. Patients and doctors deciding together on a course of care or treatment. The concept of patient-centered care cannot be fully realized until everyone involved has a say.

Have you ever played a role in deciding on your own course of treatment? Or do you typically hesitate to speak up to your health care providers? Let us know in the comments section.

Help A Sick Child this Holiday Season

No family should ever have to wonder whether they can afford to save their child’s life, but that very question haunts families all over the country, every day. Through the HealthWell Pediatric Assistance Fund,® however, we are working to change that — because no adult or child should go without health care because they can’t afford it.

In just two months, the HealthWell Foundation awarded  grants of up to $5,000 to more than 20 families. These grants help children like Anna, who was born with a rare disorder affecting the brain known as Sturge-Weber Syndrome. A grant from Pediatric Assistance Fund eased the financial burden that Anna’s family faced after the radical surgery she underwent to help stop her seizures and stroke-like episodes. Now instead of having to choose between paying the bills and affording life-saving treatment, Anna’s family can focus on her recovery and watching her grow up.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder. Photo (right): Now she is back home, seizure free -- healing and growing.

Photo (left): Earlier this year, Anna had surgery for a rare brain disorder.
Photo (right): Now she is back home, seizure free — healing and growing.

We want to empower even more families just like Anna’s, so they can afford the treatments their children desperately need. That’s why, during this season of giving, we’re urging you to donate to the Pediatric Assistance Fund so we can help the next family, just in time for the holidays. 100 percent of your tax-deductible gift will go directly to patient grants and services to help children start or continue critical medical treatments.

In the following letter, Anna’s mom Mary from Delta, Pennsylvania, shares the challenges of affording care for their little girl and the big difference that HealthWell’s Pediatric Assistance Fund grant made in their lives:

Our daughter, Anna was born with a birthmark on her face and scalp. The doctors suspected there was more to the story. A CT scan of her head confirmed the diagnosis of Sturge-Weber Syndrome, a rare disorder affecting the brain. We spent the next few weeks as new parents trying to understand our beautiful little girl and the rare disease she had. When she was just 3 weeks old, she had her first set of seizures. It was terrifying to see her little body so out of control. She was admitted to the hospital and started on medication. The doctors were able to control the seizures, but never for too long.

Since that first seizure many years ago, we have celebrated many days without seizures and suffered through the days when they eventually returned. We changed medications, avoided activity that might over fatigue her, struggled through specialized diets and prayed for a cure. In January, Anna was scheduled to undergo a radical surgery to remove the diseased half of her brain. We knew this could offer her a future without seizures, but we also knew the incredible cost we faced.

With the help of the HealthWell Foundation, Anna had her surgery. She is back home, seizure free – healing and growing. Our family has been able to focus our attention on Anna’s recovery knowing the financial burden has been reduced.

We are so grateful for the financial support the HealthWell Foundation has offered to us. With their help, we are able to celebrate the wonderful little girl God has blessed us with and we look forward to her bright future.

Give to the Pediatric Assistance Fund today so we can make life a little easier for more families with children facing chronic or life-altering conditions.

Categories: Cost-Savings

We Need a Little Certainty

When you’ve been diagnosed with cancer like me, you’re faced with an overwhelming amount of uncertainty. Did they catch it in time? Will the treatments work? And for many cancer patients, can I afford good treatment?

Linda Barlow

Linda Barlow

The Emergency Cancer Relief Fund (ECRF) could answer this question, but only if the HealthWell Foundation receives the donations it needs in order to open it.

It’s both sad and frustrating that here, in one of the most highly developed nations in the world, many cancer patients have to wonder if they can afford to save their own lives. Unfortunately, even having health insurance is not always enough of a safety net to avoid personal financial collapse while fighting the fight of your life.

As the bills start to roll in, so too does a new wave of uncertainty: Can you afford what you need to get better?

Providing assistance to people living with cancer has always been a priority for organizations like the HealthWell Foundation. Since 2004, HealthWell has been leading the way in bringing financial relief to more than 70,000 cancer patients with copay assistance through more than 20 oncology funds – yet so many more need help.

That is why I’m turning to you today. HealthWell has made the decision to create the ECRF. It is not yet open, but I want that to change. And for that to happen, HealthWell needs your help today.

Once launched, the ECRF will help people with expenses not covered under traditional current cancer copay funds, expanding services to even more cancer patients who have exhausted all other options and have no one to turn to.

For example, the ECRF can grant as little as $25 to help someone pay for anti-nausea medicine. Larger grants can also help patients overwhelmed by medical expenses accumulated during their treatment, such as medical equipment needs and diagnostic testing.

The ECRF will follow patients every step of the way through their treatment or recovery. It will almost be like having another caregiver watching out for your well-being. And for those of us who have lived through or are living with cancer, we know how important that caregiver network can be.

To that end, I would like to personally recognize and thank all of the health care providers at Abington Memorial Hospital and The Rosenfeld Cancer Center who took such good care of me during my recent treatments for breast cancer. From my initial diagnosis through my follow-up visits, every physician, nurse, therapist and technician I’ve encountered has treated me with both professionalism and the compassion and kindness a cancer patient needs to get through the day.

Compassion and kindness – they’re like life-giving oxygen to a cancer patient. But compassion and kindness aren’t just the hallmark of professional caregivers and loved ones. The ECRF will be proof of that, but HealthWell first has to raise enough money to open the fund so patients can benefit from it.

And that’s where your support comes in. If you want to show compassion and kindness to those with cancer, now is the time. Give to ECRF today so that HealthWell can launch the fund and help cancer patients avoid one more uncertainty in their lives.

When the Health Care Blogger Becomes the Cancer Patient

The call came the day after my 48th birthday in April.

“The radiologist saw something suspicious on your mammogram from last week…an undetermined mass,” said the voice on the other end of the phone. “We’d like you to come in for an ultrasound so we can see better.”

Linda Barlow

Linda Barlow

During the ultrasound they assured me that it was probably nothing…that in most cases, it’s a benign lump and not cancer. Surely, I thought, as I scheduled a needle biopsy for a few days later, this would be the case for me as well.

But it was not the case. Once the results from the biopsy came back, I realized that I had become a cancer patient. I was now part of a community of more than one million other Americans who are diagnosed with cancer each year.

The days and weeks after that ultrasound and needle biopsy became a whirlwind of doctor’s appointments, tests, and procedures, as well as surgery to remove the lump in my breast, along with several lymph nodes. As of this writing, I’m undergoing six weeks of daily radiation treatments, and soon will be starting drug therapies that will last for at least five and up to 15 years.

Just when I started to recover from the surgery, the bills started to roll in. I have what I thought was pretty good (but expensive from a premium standpoint) medical coverage under my husband’s workplace plan. But even with premiums that are far higher this year than we’ve ever had to pay in the past, the system demanded more of our money:

  • $334.43 for one ultrasound
  • $106.04 for another ultrasound
  • $35.49 for an oncologist office visit
  • $131.15 for a nuclear medicine injection prior to my sentinel node removal
  • $421.80 for my lumpectomy
  • $468.61 for lumpectomy prep work
  • $181 for the surgeon who removed the lump
  • $60 for post-surgery physical therapy
  • $737.45 for oncotype diagnosis test

These are just a few examples and don’t include charges relating to the 30 radiation treatments I’ll be receiving or the genetic testing being done (since cancer runs in the family).

While these out of pocket costs are certainly hard to swallow – I can think of a hundred other things I’d rather spend my money on – for my family, they are doable. We won’t have to skip a mortgage payment or a utility bill. We won’t have to dip into a child’s college tuition fund. We certainly won’t have to worry about having enough money for food.

But I know – from my work on this blog and with its main sponsor, the HealthWell Foundation – that many families living with cancer aren’t so lucky.

I had the opportunity to help HealthWell create a White Paper, “When Health Insurance is Not Enough: How Charitable Copayment Assistance Organizations Enhance Patient Access to Care,” which investigated the devastating effects of not being able to afford needed treatments for chronic and life-altering medical conditions. For some individuals and families, out-of-pocket expenses including deductibles, copayments and coinsurance can total thousands of dollars each month – much more than many people earn.

That’s not the case for me. I’m one of the lucky ones.

“I’m lucky” is a statement you don’t often hear from cancer patients, but it’s how I feel about my situation. I’m lucky that my cancer was caught early by an astute reading of my mammogram. I’m lucky that my specific type of cancer was deemed “curable” and didn’t spread to my lymph nodes or other organs. I’m lucky that my job as a freelance writer gives me the flexibility to go to doctor’s appointments when needed. And I’m lucky to be in a two-income household with no kids and the easy ability to pay our bills. For now.

Of course, this could all change in a heartbeat. My freelance assignments could dry up, which would impact our income. My husband could lose his job or become disabled. We could be hit with an unexpected and costly disaster like a house fire or a tree crashing through our roof. The cancer could come back.

I am, in effect, a heartbeat away from being in a position to need real financial help.

If I need help, I’m thankful that charitable copayment assistance foundations like the HealthWell Foundation exist. Cancer isn’t something you can put on the back burner until the time or money is right. Treatment is costly. Premiums and copayments are high. For the 29 million Americans with limited incomes and/or inadequate insurance, the toll can be devastating – physically, emotionally and financially.

That’s why I’m calling on readers of this blog to help. Your donation to the HealthWell Foundation, the American Cancer Society or other charitable assistance foundations really will make a difference. Maybe not for me personally, but certainly for the millions who aren’t as lucky as me.

Categories: Cost-Savings

Heroes Needed: Apply Within

We’re taking a departure today from our coverage of what works in American health care to ask for your help.

Patients want us to re-open our Breast Cancer Fund at HealthWell, but we can’t successfully do that until we identify several key companies or organizations to partner with us in this effort.

When HealthWell’s Breast Cancer Fund was open, thousands of Americans battling breast cancer found new hope to live healthier lives. Nearly 17,000 insured breast cancer patients received the financial assistance they needed so that the surging cost of treatments was not a barrier to accessing critical care.

As HealthWell prepares to re-launch its massive Breast Cancer Fund, we are expanding our call to action. We are seeking partners to help us make a real, positive difference in the lives of insured patients who often struggle to afford critical treatment including medications.

By becoming a strategic partner with the HealthWell Foundation, your organization will help thousands of Americans who face medical bills they can’t afford.  Beyond the incredible satisfaction of knowing that you played a role in persuading your organization to help us re-open this fund, you’ll gain a cause marketing partner that will support your efforts to build and shape your brand to new audiences.

When you work with us to empower patients, you will leverage a unique opportunity to win exclusivity, naming rights and more.

With one in eight women in the U.S. expected to develop breast cancer during her lifetime, the need for timely, life-sustaining care is outpacing our health system’s ability to assist patients. More and more Americans are in desperate need of immediate financial relief to afford deductibles, co-pays and premiums, yet many have few places, if any, to turn for assistance.

Women like Linda in Powell, Tenn., illustrate exactly why support for the Breast Cancer Fund at HealthWell is needed. When Linda realized just how expensive her breast cancer medication would be, she was scared. As a self-employed grandmother of two, she faced a $5,500 deductible for her insurance premium alone. Additional costs for mammograms, colonoscopy, endoscopy and lab work were all out-of-pocket and she wasn’t sure how she would make ends meet.

That is, until she discovered the Breast Cancer Fund at HealthWell, a lifeline that enabled her to afford the treatments she needed to remain cancer-free two years after her diagnosis.

“My patient advocate gave me a list of several foundations to contact which I did,” Linda said. “The first turned me down because they said we went $50 over our salary. The second turned me down because I had a deductible. Then I heard from HealthWell. We couldn’t believe we had found help. We just had to cry. I am so thankful. Every time I have my prescription filled it still amazes me. Not many good things have happened to us.”

The fund’s incredible track record of success in offering assistance to patients in need is exactly why we must reopen it now.

The HealthWell Foundation believes that no patient – adult or child – should go without health care because he or she cannot afford it. As demand for medical treatments increases while associated prices continue to spike, we want the Breast Cancer Fund at HealthWell to once again provide timely, critical copay and premium assistance and expanded services to breast cancer patients.

These services went far to ease the strain felt by patients covered under Medicare, Medicaid, private insurance and employer-sponsored plans with incomes up to 400% of the federal poverty level.

Strengthening the financial safety net for more patients begins with teamwork. Together we can be part of the solution, harnessing our resources to make access to quality medical treatment a reality for more Americans battling breast cancer. Please contact us if your company may be interested in partnering with us to re-open this vital fund.

The HealthWell Foundation sponsors this blog because we are innovators in finding solutions to overcome hurdles in the American health care system. The thousands of women at work right now trying to clear the hurdle of breast cancer deserve everything we have to give.  Join us.  We have so much yet to do.  And you could make a difference in so many lives.

Categories: Cost-Savings