Bill Keller’s Misguided NYT OpEd Piece: MBCN Responds

Dear Editor, NYTimes:

Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors. It also misrepresents what metastatic breast cancer is and how it is treated.

Whether you agree with Lisa Bonchek Adam’s decision to chart her cancer via social media, it’s always helpful to get the facts right.  While it is true that Adams was diagnosed with early stage cancer seven years ago, she has not been in a seven-year “public cage fight with death.”

When she was diagnosed with metastatic breast cancer (MBC) a little over a year ago, it was then that  her cancer became incurable–but still treatable—for now. For now, Adams is LIVING with metastatic breast cancer, as are 150,000 other US people. As Adams correctly told Keller, the course of the disease can involve many periods of relative stability, interspersed with serious complications and side effects. To live with MBC is to embrace uncertainty—you don’t know if a drug will work,  how long it  will work and how you will tolerate it. You just take it one day at a time. There is no wrong or right way to live with metastatic breast cancer–there is only the way that works best for YOU.

MBC, also known as Stage IV, is the most advanced form of breast cancer, where cancer has spread to distant organs. It is not an automatic death sentence, although it is true some will succumb quickly. With MBC, treatments focus on controlling–but not eliminating–the cancer while maintaining a good quality of life.  Some oncologists say that MBC is becoming a chronic disease, but with an average life expectancy of 2-3 years from the metastatic diagnosis, much work obviously remains to be done.

Keller compares his aged father’s cancer death to Adams’ situation, as if there were no difference between a 44-year-old woman with a family and a treatable disease and an older man at the end of his life. Yes, Adams is in crisis now, but she may emerge to a new level of stability–again, to live with MBC is to embrace uncertainty.

Just because we have a terminal diagnosis doesn’t mean we are going to pop off at any moment. Some patients with MBC do very well with the combination of standard treatment and palliative care and can live 5 or even 10 years past diagnosis. So, to quote Yosemite Sam, “Back off, ya varmint!”

Keller clearly does not understand clinical trials, either. We can thank patient participation in clinical trials for all new drugs—breast cancer and otherwise.  Doctors use clinical research studies to compare current treatments with potentially better ones.

Keller implied that Adams’ has one foot in the grave and one foot on a banana peel—and that a clinical trial was her last hope or that she was wrong to be an “eager research subject.” From what Adams has shared on line, she has more treatments left to try. We owe people like Adams a huge debt of gratitude for being in a clinical trial—and the very real need for more people to be in clinical trials would have made a far better Op-Ed.

Had Keller read Adams’ blog more closely, he would know she has always spoken out against the breast cancer warrior mentality and the destructive message of the pink breast cancer community that you are a failure if you are not a “survivor.” Also, any proactive metastatic breast cancer patient will have many conferences with his or her health care team.

If Keller had truly wanted to contribute a compelling Op-Ed on death and breast cancer, he should have called attention to “Tackling a Racial Gap in Breast Cancer Survival,” an article the Times published on December 20, 2013.

“Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women,” writes Tara Parker-Pope. “Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.”

Where is the outrage over THAT? This year, 40,000 people in the US will die from metastatic  breast cancer.  If this is the “inevitable fate” Keller references, we say no thank you!

For more information on metastatic breast cancer, please see www.mbcn.org

Please start by reviewing Dr. Don Dizon’s excellent talk,  “Living with MBC,” presented at MBCN’s 2013 conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Sincerely,

The Metastatic Breast Cancer Network

Dr Don Dizon answering a question during his talk on Living with MBC.

Finding Financial Assistance

We frequently field inquiries about financial assistance for direct medical costs (co-pays, deductibles), related non-medical costs (transportation, gas, child care) or daily living expenses (rent, utilities). Note that MBCN does not give direct aid, and, as an all-volunteer operation,  lacks the resources to provide one-on-one advice.  But we wanted to offer these general  suggestions–if you have a tip, please comment below!

Many agencies budget a certain amount of financial aid per year. Once they have disbursed their annual allocation, that’s it until the following year. Some national cancer non-profit groups can direct you to sources of aid in your community–but few offer direct financial help themselves. With some research, you can find sources of help in your community. If you lack the time or computer access to investigate these organizations, recruit a relative or friend to help you!

Don’t automatically assume you won’t qualify because you are working, have insurance or are too young or too old. One of our members offers this example: “I have bone mets and have been getting a monthly bone-boosting shot for years. Because I am employed and have insurance, I assumed I didn’t qualify for co-pay assistance and I never asked about it. But the drug maker actually has a program for people just like me that will save me thousands of dollars. Every penny counts–I wish I had looked into this sooner!”

Talk With your Health Care Team. Often a social worker or financial person at your hospital or infusion center can offer suggestions and direct you to local resources.

See What is Available. Cancer Care, a national organization has a very helpful booklet, A Helping Hand- The Resource Guide for People with Cancer. You can view the document online or order a copy. You can also contact Cancer Care at 800-813-4673 and speak to one of their professional oncology social workers, who will guide you through the process.

Check with Individual Pharmaceutical Companies. Almost every pharmaceutical company has patient assistance programs to help patients with the co-pay for specific drugs. The website is usually the name of the drug. So, for example, if you are taking Herceptin and need information on assistance with co-pays, go to  www.herceptin.com. Similarly,  for Afinitor: go to www.afinitor.com.   For Xgeva, see www.xgeva.com.

Call 211. Many communities have a 211 information and referral service, funded by The United Way.  Simply call 211  or go to : www.211.org to find help with food, housing, employment, health care, counseling and more. Available in English and Spanish.

Check the Database to Find Help in Your Area. The Cancer Financial Assistance Coalition (www.cancerfac.org) is a group of 14 organizations who provide a searchable database of resources available to you based on your diagnosis and zip code.  You simply enter both and will then get a list of organizations who may be able to help you, including those local to your state or area.

Know your Social Security Disability Options. Many people diagnosed with metastatic breast cancer, also called advanced breast cancer or Stage IV breast cancer, qualify for Social Security Disability under the compassionate allowance program. (This assumes  you have the required work history.)  This can be very helpful, if you are no longer able to work. Note that you need to have your own insurance coverage for a two-year waiting period before Medicare takes effect.  Read more on how to apply.

Early Life Insurance Payouts. A life insurance policy ordinarily pays benefits to a beneficiary after a policy owner dies. Those benefits are accelerated if they are paid directly to a chronically or terminally ill policy owner before he or she dies. Check with your insurance agent or company to see if your policy includes or offers the option. Group policies for term or permanent life insurance may also provide accelerated benefits; check with your benefits administrator.

Note that a metastatic diagnosis isn’t an automatic entitlement to an early payout; your doctor will be asked to affirm you have a terminal illness with death expected within a specific time frame (usually 12 to 24 months). Very few benefit administrators are familiar with accelerated death benefits, it’s wise to review the policy yourself and contact the insurance company directly. Here’s what some people with MBC report.

Here is just a sampling of potential sources of help:

Help Now Fund  provides emergency financial assistance to help people in active treatment with their rent and utilities: http://www.thebreastcancercharities.org/help-now-fund/

The Health Well Foundation offers assistance with copay or insurance premium payments for insured patients, based on availability of funds. They have a quick eligibility test online:
http://www.healthwellfoundation.org

Patient Access Network Foundation provides  co-pay, deductible and medication financial assistance:

PAF Financial Aid Fund Division is an independent division of Patient Advocate Foundation. It  provides small grants to patients who meet financial and medical criteria.  Patients who are interested in applying for financial assistance should start by calling this division toll free at (855) 824-7941.

Freebies and Discounts for Cancer Patients as compiled by 1 Up on Cancer:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

See More Options Here.  MBCN has a website page that also lists financial resources.

Be Persistent. You may have to make a lot of phone calls and visit a lot of websites in order to get help. There are restrictions on the type and amount of aid given and organizations often have limited funds to disburse.  But hopefully your persistence will yield results and you will have some peace of mind about your financial status.

Please share this with anyone you know who is having financial difficulty because of their cancer. If you have other suggestions based on your experience, please comment below.  Thank you!