Real World Health Care Blog

Tag Archives: american cancer society

Support and Health Information for Breast Cancer Patients Just a Click Away

As we saw in last week’s post, the American Cancer Society (ACS) is helping to change the way those living with breast cancer access the information they need to live healthier.  But ACS is not the only organization that’s empowering patients, especially women, to take control of their health through innovative online tools both during and after National Breast Cancer Awareness Month.

Linda Barlow

Linda Barlow is a nonprofit organization dedicated to providing the most reliable, complete and up-to-date information about breast cancer and breast health as well as an active and supportive online community. The organization’s website, which is also available in Spanish, provides information and resources about symptoms and diagnosis, treatments and side effects, day-to-day matters of living with breast cancer, and how to lower your risk. A Community portal features discussion boardschat rooms, a blog, and a link to Ask-the-Expert online conferences.

CancerCare is a non-profit organization that provides telephone, online and face-to-face counseling, support groups, education, publications and more – all for free. Its Breast Cancer web page offers information about upcoming workshops and links to breast cancer-related podcasts to more than 1 million visitors each year.

The Mayo Clinic and the Mayo Clinic Cancer Center offer a range of breast cancer treatment services and conduct ongoing cancer research. A special Breast Cancer page offers basic information about breast cancer, from symptoms, causes and risk factors to how to prepare for a breast cancer-related doctor’s appointment. In-depth information is available for those who want it, along with a FAQ and a blog written by a Mayo Clinic nurse educator.

“Breast cancer patients and their loved ones need both support and reliable information,” said Katie Freeman, Communications Coordinator, CancerCare. “Fortunately, with our online services and support groups, patients don’t have to face these challenges alone.”

MyHealthTeams was created as a network of social media platforms to serve as a resource for chronic condition communities, to make life easier for those diagnosed with a disease – and their families – to connect with others, share their daily experiences, and find the help they need. Since its founding in 2010, MyHealthTeams launched three social networks – MyAutismTeam, for parents of children with autism; MyBCTeam, for women facing breast cancer; andMyMSTeam, for those living with multiple sclerosis.

Susan G. Komen for the Cure, through events like its Komen Race for the Cure, has invested $2 billion to end breast cancer in the U.S. and throughout the world through groundbreaking research, community health outreach, advocacy and programs in more than 50 countries. Komen’s website offers a number of resources and interactive tools, both for patients who have been diagnosed with breast cancer, and for those who know someone who was diagnosed with breast cancer. A message board and a blog let those touched by breast cancer share their stories, questions, and information about breast cancer news and education.

These are just a few of the organizations helping to support those living with breast cancer and their loved ones. Have you been diagnosed with breast cancer or know someone who has? What are the organizations and websites you’ve turned to for help and information? What resources – particularly online platforms – have you found to be most effective in addressing your needs as a patient or as a family member of someone living with breast cancer?

Categories: Access to Care

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