Mental Health Parity: This is a Really, Really Good Thing

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There is a new regulation going into effect on the national level that is going to help millions upon millions of Americans: insurance companies will be required to treat mental health and substance abuse the same as general physical ailments.

This is huge. And it makes me want to tell you a story, because this is something I have personal experience in:

My first job out of college was working for a California company that provided mental health case management and claims administration as a carveout to local HMO providers for professional services. Mental health is a very nuanced field in healthcare, and at the time, most HMOs would contract with a company that specialized in that area to handle their members’ needs. The HMOs would pay either as a fee-for-service (which is to say, the carveout would receive a certain amount of money per procedure), or, they would pay a monthly capitation rate (which is a lump sum estimated on the number of lives covered). To make money on a fee-for-service, the carveout simply had to pay the provider of the service less than what they received from the HMO. To make money on capitation, the carveout had to make sure that payments to providers each month were less than what they received from the HMO each month. Of course, the providers had to be contracted with the carveout, so those rates were previously negotiated.  This is a fairly predictable thing, as the carveouts typically only handled professional fees (doctor’s/therapist’s visits), which means they were shielded from those huge-dollar, unpredictable hospital bills.

With all of the problems I saw in the company I worked for, I can honestly say that despite the obvious temptation to shortchange care for a larger profit margin, I never saw them do this. They’d cut corners in every way imaginable, but in the end if someone needed care, they got care. That said, I saw a system that was designed to fail: the Pre-Parity California System.

At that time, all mental health was considered a “specialist” benefit. You know how on the back of your insurance card, you have a lower copay for general office visits and OB/GYN visits, but a higher copay for specialists? Mental health providers fell under that specialist category. If you had schizophrenia, bipolar disorder, severe depression, or any other mental illness, you had to pay that higher copay whenever you saw your mental health providers. In these more serious instances, that meant you had to pay a copay once a month for your 15-minute medication management session with a psychiatrist, and you had to pay a copay no less than once a week for your 45 minute counseling session with your therapist. With things like severe depression or anxiety, it’s not unheard of to have a therapy session two or three times a week. Keep in mind, if you were on an HMO like our patients were, your doc had to obtain an authorization to see you, and “renew” that authorization every 6 visits (which is why so many providers hate HMOs; on the other side, it does provide a check that can ensure a provider isn’t fraudulently billing or just dicking around in their sessions).

The worst example of this process I’ve seen came from an insurance I’m going to call Acme Health. This is a huge national provider that had and has a presence in California. Their specialist visit copay in 1999 was…get ready for this…$50/visit. Fifty damn dollars. Now here’s the kicker – due to our agreement with the HMO group connected to Acme Health, we were contractually obligated to take that full copay amount from the member. Why is that worth mentioning? Because our medication management reimbursed at $45. So because the patient was using their insurance, they actually paid more out-of-pocket than what we charged for the session. Once a month, for a session that lasted up to 15 minutes, no more. If you did medication management, you almost always had to supplement it with counseling, so add $50 per week to a counseling session with a masters-level therapist, who was reimbursed at $65 per session. So in one month, you, a person who is schizophrenic or severely depressed or what have you, just spent $250 on your mental health on top of what you pay monthly for your premium. Your insurance paid $60. Do you see where this comes across as somewhat immoral and outrageous?

I was working for the company when California passed their own Parity Act. The act stated that any treatment for specific diagnoses (all severe mental illnesses, like schizophrenia or severe depression) had to be handled the way a general office visit would, meaning members only had to pay their office visit copay and not their specialist copay. Those people who were paying $50 a visit, now only had to pay $10 a visit. Rather than spending $250 a month on their care, they were now only spending $50 a month (plus that premium, of course). Think about that when you hear Big Insurance panic – and they will. They were making a fortune off of the mentally ill in California, and then they were cut off.

The Parity Act killed businesses like the one I worked for – why pay someone to manage something that you are now managing like a regular office visit? We folded in under a year due to the passage of that act. I had no problem with that. When you hear Big Insurance say they can’t stay in business because of this government interference? Just look at Acme Health – they are still in business today, and are one of the largest and most profitable insurance providers not only in California, but in the nation.

Breast Cancer: The Divide Between Awareness and Progress

This past Sunday, New York Times Magazine had an insightful cover story entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. The title jumped out at me for very personal reasons: my best friend is an Inflammatory Breast Cancer (IBC) survivor. When she was first diagnosed in 2009 (at the age of 34), I saw the pink ribbon as a symbol of hope and solidarity. Times have changed a bit.

From 2009 to the present, my friend had chemo, a double masectomy, some lymph nodes removed, radiation, reconstructive surgery where they used muscles from her back to create breasts, a part of her lung removed when her cancer metastasized, and then a hysterectomy because they found estrogen in the tumor in her lung and it confirmed to the doctors that she can’t have estrogen in her body if she wants to have any shot of keeping the cancer away. During all of this, Races for the Cure came and went, a local TV station threw annual telethons where they gave out pink canvas bags emblazoned with their station’s pinked-up logo to donors (costing $6 for shipping, by the way), and pink-infused football games trampled on in all their pink-cleated glory. All the while, no new information, or at times any information was really given to the public about breast cancer. Good luck if you wanted to hear even a mention about IBC, which happens to be among the most lethal forms of breast cancer. I began to wonder when the hell these multi-million dollar outfits were going to actually educate the public on breast cancer beyond Mammographies!Pink!Self-Exam!GOPINK! Pink!PinketyPinkPinkPinkAware!  Behind all of this pink shit, you start to wonder if “awareness” and education are two completely different concepts. For this reason, Peggy Orenstein’s article piqued my interest.

One of the most interesting aspects of Orenstein’s article is her criticism of the “awareness” campaign’s predominant focus on mammograms. After her cancer was detected on her first mammogram, Orenstein was a loud and vocal supporter of them; why is she changing her tune now? Through her research, she came across studies that indicated that women were often over-diagnosed and received unnecessary treatment, exposing them to harmful chemicals and unnecessary procedures. She found that the push for mammograms barely made a scratch on the statistics for women with lethal forms of breast cancer, and for certain age ranges, the mortality rates haven’t changed at all since mammograms became widely used. She points out an interesting fact that is often lost in the messaging: breast cancer alone does not kill you. It kills when it metastasizes to other organs, and there is no evidence linking the size or age of a tumor to when cancer metastasizes, challenging the idea that early detection prevents metastasis.

Now this isn’t to say that we all need to stop doing our self-examinations and just give up on supporting the cause; I also don’t want to discount what Susan G. Komen and other breast cancer charities have done to destigmatize breast cancer. The danger of their overfocus on Pink Awareness is it not only promotes a message that conflicts from multiple scientific findings, it also gets in the way of progress by putting the Brand of Breast Cancer Awareness before education, research and development. In all the years of pink cleats and pink yogurt lids, what exactly have we learned through this campaign? Through this messaging, who has learned that IBC usually doesn’t show up in the form of lumps, but rather a change of texture to your skin? Or who has learned that there are four genetically distinct breast cancers, and that they all respond differently to treatment? And how much of this money raised has gone to research to find a cure? Orenstein reports that the most recent financials available for Susan G Komen show that 16% of the money raised in 2011 went towards research. While that amount is no small potatoes when looking at how much they bring in, it seems to be a remarkably low percentage for a company who sued to trademark “For the Cure.”

As Susan G. Komen looks to find its footing after a year filled with abysmal PR, they find themselves standing in front of an excellent opportunity to take the next progressive leap for the cure: to step away from the information-free ubiquitous wasteland of pink branding, and replace it with a ubiquitous voice and funding source for research and champion for those fighting breast cancer – not just those who have fought and survived, but those who are fighting and struggling to win the battle – a group Orenstein notes is absent from the awareness campaigns.

This last point is important to me. Through these years, I saw my friend fight for her life both physically and mentally. I watched her dig deep and survive – surviving in a way that transcends any illness. This is another thing they don’t tell you about on the yogurt lids: they don’t tell people how hard it is to emotionally recover from cancer. I’ve seen my friend find herself in a very dark place, and I’ve seen her claw her way out of it like the fierce badass mofo she is. It’s hard work to do that, but damn it, she’s done it. Because she’s my badass friend. She is one of many fighters who have had IBC or metastasized cancer and it’s time for us to fight for them and get the breast cancer awareness back on track.

Sources and recommended further reading:
Our Feel-Good War on Breast Cancer
The National Cancer Institute Fact Sheet on Inflammatory Breast Cancer
NEJM: Effect of Three Decades of Screening Mammography on Breast Cancer Incidence

The Breast Cancer You Aren’t Looking For

80-90% of the time, Virgin to Life is about me being a big goofball and telling you amusing/funny stories about the things I’ve learned in life.  As can be expected, not all of the things we learn in life are amusing or funny, yet I feel these lessons still need to be shared.  With October being Breast Cancer Awareness Month, I would like to share a story of a type of breast cancer I didn’t know about until mid-2009.  Unless you’ve been affected by it, I’m betting you probably haven’t heard about it either; I cannot recall learning about it in any class on women’s health, or hearing it mentioned in my annual Ob-Gyn visits.  Please take a few minutes to read my story below, and share it with the women in your life.  I originally posted this on Facebook last year.

In June 2009, my best friend Debbie was experiencing the joys of being a first-time mom.  After years of trying, Debbie was finally blessed with Adam James, who may just be the happiest, cutest little boy you’ll ever see – not that I’m biased or anything.  Seriously, if you ever see AJ, within five minutes, you’ll become a Vaudeville performer determined to entertain him and keep that sunshine on his face.  I’m not even a “kid” person, yet when I last visited Debbie, I found myself making funny faces and ready to do a song and dance for him.

Like all moms, Debbie’s body changed during and after pregnancy.  After bringing a little person into this world, you expect that your body is going to make a few adjustments.  Debbie noticed a particular change to her body while she was breastfeeding – her skin became tough, almost like the texture of an orange peel.  She assumed this was due to her breastfeeding and wasn’t overly concerned.  A few months later, Debbie did her monthly breast self-examination, and found a lump.  She went to her doctor, and after a number of tests, she was diagnosed with inflammatory breast cancer.

Inflammatory breast cancer (IBC) is an extremely aggressive form of cancer that can occur in both men and women.   It moves fast and spreads quickly, often going into lymph nodes and into other organs.  The outlook is often poor because of its ability to go undetected for so long.  The five year survival rate for IBC is 40% compared with 87% for all breast cancers.  Due to its aggressive nature, treatment has to be equally aggressive.  Following her diagnosis, Debbie bravely went through several rounds of chemo, had a double mastectomy, and finally went through several rounds of radiation.  Thankfully, even though doctors still found cancer cells in her removed breast tissue, as of today Debbie has no cancer cells in her body.

Debbie, 34 at time of diagnosis, is in the .0013% of the population diagnosed with IBC. There is no occurrence of breast cancer in her family and, unlike most who are diagnosed with IBC, Debbie had a lump in her breast. If this is your first time hearing about IBC, I’m going to repeat that – with IBC, you do not typically find a lump.  The frightening discovery of a lump in this case is likely what saved my best friend’s life.  So, let’s break this down – my friend with no family history of breast cancer, is not only diagnosed with breast cancer, she’s younger than most people who have breast cancer, she gets a type of breast cancer which makes up 1-6% of all breast cancer cases in the US, and of that 1-6%, she’s in a small percentage who had a lump.

Here is my question to you – have you ever played the lottery or entered a raffle? Why is it, when there’s a 1 in 100,000 chance of winning a million dollars, we’ll gladly throw down a few bucks, but when we hear of an illness that affects 1 in 100,000, we say, “well, I’m not that one.”  Guess what? Any one of us can be that one. Until they can find a cure, the best way you can arm yourself against this disease is through education.  I encourage you to read the symptoms below and share your newfound knowledge with others.   Keep in mind that with IBC, the symptoms vary in occurrence and severity.  Per Wikipedia, They may include:

-       Pain in breast

-       Skin changes on the breast

-       Reddened area with texture resembling the peel of an orange

-       Sudden swelling of the breast

-       Itching of the breast

-       Nipple retraction or discharge

-       Swelling of lymph nodes under the arm or in the neck

-       Unusual warmth of the affected breast

-       Breast is harder or firmer

Also per Wikipedia, other symptoms may rarely include:

-       Swelling of the arm

-       Breast decreases instead of increasing

In most IBC cases there is NOT a well-defined tumor, however when one is present, it will grow rapidly.  The only reliable method of diagnosis is biopsy.  IBC can go undetected in a mammography or ultrasound.

The bottom line is this: YOU know your body better than anyone. If something doesn’t seem right to you, go to your doctor. Don’t be afraid to ask questions, and don’t be afraid to get a second opinion.

When I showed this to Debbie to get her “ok” to post this, she wanted to point out that yes, treatment does suck, however it could be a lot worse.  In her journey with this disease, she’s learned that aggressive treatment and a positive attitude goes a long, long way.