Wednesday, October 2, 2013

The Other Awareness

 I have been packing to move. For a few hours this morning I tackled my storage closet. There was one box way in the back with writing on it that said "Circle Girls- Do NOT throw out."

I opened it up and in it were letters and cards from the sisters I have come to know over the years through my breast cancer network. There was a group of us called Circle Girls in one location and they moved over to the No Surrender site when it was started. "Circle Girls" refers to circling the wagons to protect ourselves from cancer, where we sit around a warm fire, in a circle of friendship, understanding,  love and much laughter.

I found the cards they all sent me when I was diagnosed for the second time. I found CDs we had burned for fun music. I also found letters and notes from sisters who we lost over the years.  These women were very dear to me and their deaths left a void in all of our lives.

Among all the "Awareness" this month, this part of breast cancer doesn't get talked about much. Instead you see Danika Patrick's hot pink race car; a Real Housewife from Orange County naked with only her special pink purse covering her healthy breasts,  and TV reporters all decked out in pink telling us all to "feel our boobies! "

The NSBCF has an awareness campaign all year long. It is for African American women who are young, much younger than the government tells us to get our first mammogram, to get screened through many different modalities. Because if they develop breast cancer it will most likely be the harder to treat triple negative breast cancer and one that you want to treat at its earliest stage. You can find it here :

You would really have to be living under a rock to not be "aware" of breast cancer today. There is almost no mention, however, of the millions of women who are dealing with breast cancer every day and who are in treatment for the rest of their lives. These women have metastatic disease.

Metastatic breast cancer is cancer that has spread beyond the breast to distant sites. It could be the bone, the lung, the liver, the brain and many other places. When someone has "mets" they are continually scanned for progression of their disease. If their scan is stable, that means they may get a chemo break for a while. If there is some growth but no further spread they actually find themselves being happy if the lung lesion "only" grew 2 centimeters. A finding that would normally terrify someone. It is often said that non-metastatic women live with "the new normal." Metastatic women live in "a new reality" and it is a scary, stressful and heartbreaking realty.

We need more treatments for advanced disease. We need to find a way to stop the spread of breast cancer throughout the body. We need these women to be able to live their lives without the shadow of The Beast breathing down their necks, every hour of every day of every year.

All the beautiful women I saved the letters and cards from who left this earth had metastatic disease.

I have recommended a good place to send your donations to before and I will recommend them again, it is The Cold Spring Harbor Laboratory. It is my belief that they are a research organization that will find the key that will open the door that will lead us all out of the hell of breast cancer - in fact all cancers.  Here is their link:

This October, don't pink. Instead, on October 13th take a moment to recognize Metastatic Breast Cancer Awareness Day by sending a donation to an accredited research organization.

People never know what to say to others who have serious diseases. It's simple: We are here for you. We will fight for you. We love you.

Tuesday, October 1, 2013

The Answer for Those of Us Who Lost Our Medical Coverage?

Concierge medicine certainly seems like it may be our best hope. The problem for cancer patients/survivors is what about our oncology team? That question needs to be answered. But if you had a private plan and were told by your carrier that you were being dropped, and the exchange in your state will either not cover you or the premium will be three times what you were currently paying, this may be something to consider.

Concierge Medicine Gains Ground

Published: Sep 28, 2013

SAN DIEGO -- Concierge doctors are spreading the word that it's possible to operate a direct primary care practice, make a living, and avoid one of the biggest headaches for family medicine physicians -- dealing with health insurance companies.

Multiple sessions at the American Academy of Family Physicians (AAFP) scientific assembly informed attendees about the growing world of direct primary care, sometimes called concierge, boutique, or retainer-based medicine. These practices charge patients a monthly or annual membership fee for unlimited office access, and bill patients for the tests and supplies they use.
When Doug Nunamaker, MD, and Josh Umbehr, MD, ended their 45-minute AAFP talk about their direct primary practice in Wichita, Kan., the two had barely walked off stage when they were besieged by a couple dozen doctors wanting more information.

Nunamaker and Umbehr opened Atlas MD, a direct primary care practice, in 2009 shortly after Umbehr left residency. They charge $50 a month in membership fees for adults ages 20 to 44, with fees ranging from $10 to $100 a month for pediatric and older patients.

They describe their payment structure on the Atlas MD website as a "direct fee-for-services arrangement [that] frees us from the typical contractual agreements that prevent physicians from offering wholesale prices on laboratory tests, imaging, and medications."

The practice quickly grew to about 600 patients in the first couple of years, with a monthly revenue of $30,000 in membership fees. The only marketing has been word of mouth.

They said patients loved the open access to their physicians. Patients are encouraged to email, call, or text their doctors with questions. The office has no office staff, and the physicians answer the phones, which they said "freaks out" patients at times.

Nunamaker and Umbehr said they loved not having to deal with insurance payers for such issues as prior authorizations or rejected claims.

The practice has added three physicians along with one full-time nurse and one part-time nurse. They said they now count 1,300 patients in their practice for $65,000 in monthly revenue from membership fees.

The practice of direct primary care is growing, but the web of providers is so fragmented that even those in the field don't know how many physicians or practices work in this way, said Sharon George, MD, who owns a one-physician direct primary care practice in Irvine, Calif.

"It's definitely growing," she added. "You don't have to leave medicine if you're frustrated. You have your medical degree."

The Direct Primary Care Coalition formed as Congress was debating the Affordable Care Act (ACA). At that time, the coalition estimated there were between 30 and 50 practices in the U.S., with around 100,000 patients.

But Erika Bliss, MD, told MedPage Today that it's likely there are more concierge doctors -- and patients who use their services -- practicing today.

Bliss, a leader of the coalition and chief executive of the five-location concierge practice Qliance, based in Seattle, said she receives Google alerts monthly about a new concierge practice or converting practice, and now estimates one direct primary care practice in nearly every state.

"This model allows you to be the kind of doctor you always wanted to be, and allows you to develop lasting, trusting relationships with patients. [You] actually get to help them ... by being able to spend more time with them [with] minimal interference from an outdated and dysfunctional payment system," she told MedPage Today in a phone interview.

The first Direct Primary Care National Summit will take place in October in St. Louis.
"If people are interested, maybe now is the time for an association that would serve to pull together knowledge and experience ... on how to do direct primary care," Bliss said.

In March, the AAFP board of directors issued a position statement in favor of the direct primary care model (DPC), saying it empowers the physician-patient relationship.

"The DPC contract fee structure can enable physicians to spend more time with their patients, both in face-to-face visits, and through telephonic or electronic communications mediums should they choose, since they are not bound by insurance reimbursement restrictions," the statement read. "For these reasons, the DPC model is consistent with the AAFP's advocacy of the [patient-centered medical home] and a blended payment method of paying family medicine practices."

However, one of the common criticisms of direct primary care is that it's an unsustainable model. Given the current shortage of primary care doctors, will there be enough concierge providers to see patients under ACA coverage expansion?

Direct primary care can help keep family doctors from retiring or moving to hospitalists jobs, Umbehr said, adding that it also offers a more rewarding lifestyle to encourage students to go into family medicine.

Umbehr pointed out that "the current model is the cause of the physician shortage. To blame direct primary care is [to blame] the victim of a crime. The only way we're going to prevent the physician shortage is by making it fun to be a doctor, reward physicians, and make their work rewarding."
As for how patients access specialty services in the concierge system, Umbehr added that concierge doctors can work directly with specialists in their area, helping patients obtain services.

For example, his practice is able to negotiate $900 colonoscopies and $225 head CT scans for their patients when appropriate.

George said that many of her patients have insurance coverage, either through Medicare or privately, that gives them access to a specialist when needed.

Umbehr said he has seen patient habits change when they are billed directly for services; they may not always opt for the most expensive medicine or test.

"When you put the choices in front of the patient, you'll see the decisions change because it's their money," he said.

This Cancer Survivor's Experience with "Affordable Care"

I had a private plan. I paid a lot of money for it. But as a person who has had breast cancer twice, I am grateful I had the coverage.

I received a letter a while back that my carrier was canceling my policy due to the "Affordable Care Act." I was told to go to the New York Health Care Exchange.

I have.

I am not eligible for coverage.
If I can find a new individual plan, the exchange informed me I will be paying twice what I was paying and it will not be for the same coverage I was protected by. What's more, my doctors, the very team that is responsible for saving my life, may not be on the plans I will be permitted to enroll in.

So for everyone out there who thinks that the "Affordable Health Care Act" is good for you: think again. It may be good for a young person with no medical problems who did not have insurance. Although according the Wall Street Journal, it will be very expensive for some, depending on where they live. Read the comprehensive report  at this link:

Ask a metastatic breast cancer patient who is on Medicare who has now lost her oncologist because of the "Affordable Health Care Act."

Ask the person who is now being denied life-saving/prolonging chemotherapy because of the "Affordable Health Care Act."

Ask the physician who is scrambling to find a way to treat patients the way they should be treated.

I am not political. I am not a right wing extremist. I am not anything but a person who has a health history a mile long and who has now lost  her health insurance and doctors due to the "Affordable Health Care Act."

Yes. Today is historic. Today is the day that patient centered medical care died. 

Closing the government is not the answer. Fixing the government is.