I'll be honest: this is personal. After receiving a diagnosis of breast carcinoma several months ago, I have been nearly incapable of traction through the healthcare system, despite having a private PPO and a lot of energy. In my efforts to get myself treated to the best of my ability, I have exhausted all appeals to Anthem Blue Cross, filed 2 grievances, opened 2 appeals with the Dept of Insurance, 1 with the Attorney General, and spoken with numerous healthcare advocates in DC as well as news media under condition of anonymity, all while my PPO creates bogus delays and process paralysis that endanger my health while waiting to get treated. The anxiety has been extraordinary, actually surpassing diagnosis.

I am considered a very young woman for this, and my insurance has done nothing but throw hurdles at me getting the larger treatment of my choosing, while trying to coerce me into a smaller surgery immediately with radiation, drugs or chemo. All of which would push me into early menopause. I would like to have children. Plus it should be enough for any woman to say, "hey. chemo's not the right choice for me." My father was diagnosed with metastatic cancer when I was 12. His last few months of aggressive chemo treatments made him forget nearly everything about me. He died the week I turned 13. I still miss him constantly. I was a daddy's girl. Even if by the end he didn't really remember me. What this impressed upon me among other things though is that I never want to have to be treated as aggressively. Alas, our healthcare system currently does not consider cancer an immediate threat to our health until it's progressed to latest stages/ palliative care. Yet... most cancers caught early have a 99% survival rate. My father should be alive today. And I should not be prevented from taking action to preserve my best chances as soon as I identify what they are for me. 

We can do so much better now, in 2014. We have better diagnostics and capabilities than ever. Not exercising them in the face of a new diagnosis should be actionable. Not treating early-stage malignancies is reckless irresponsibility. Putting real patient care in "Medical Review" committees comprised of insurance company employees rather than actual surgeons is sheer, abundant stupidity. It endangers patients immeasurably, and costs far more to the system anyway.

Just one example of the nonsense I have faced: having to appeal my way through a mandatory 6 month "hold on services" because I'd lived outside the country. Come on now, insurance companies. I won't even bore you with all the other absurd reasons they have found to delay me. Because I was not content to take what was handed me, and made myself a nuisance with continued re-appealing, (during which time I was repeatedly told to STOP taking action, lest my policy outright drop me..and also during which my appeals were stalled because I exercised my right to file grievances), they mercifully tired of me, so I was able to begin surgeries last week at last, ahead of the hold, only to find there are complications we didn't even know of, that may very well have arisen during months of wading through these endless rounds of approvals and authorizations for surgery. Meaning I go into the bigger surgery this week with increased risks and stress; when this week should find me calmer after last week's preliminary. This can't be our system.

I have heavily considered whether to share this, and seriously loathe having this be public. Because it shouldn't have to be. I should be able to concentrate on nothing other than getting through this and being healthy. But more than I even value my privacy, I never want another woman to go through this, very simply. So please, sign my petition. Your signature would mean the world to me. No matter where you are, in any state, in any country: your support of this proposal to get breast cancer patients far better treatment can help sway US government. Because after all, this is still a democracy. My agenda is not covered by the new changes coming, incidentally. So that means 1 in 8 women still doesn't have real treatment under the promise of the 1998 Act, whose time has clearly come for amending. Where we are now is impardonable for women in any developed nation, let alone America: circa 2014. Please support ensuring better policy and process for every woman after me.

This proposal in full is now in the CA State Capitol Office, submitted by the very kind and esteemed Senator Ted W. Lieu, for consideration for legislation in 2014. Please help me show Sacramento immediate and deep support for this, whatever your state or country. Thank you for your consideration, please share as you deem appropriate or worthy, and stand up for women trying to stand up for themselves against repeated endangering bureaucracy. 

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(Some key points below from the full proposal.)

Following The Women’s Health and Cancer Rights Act (WHCRA) of 1998, breast reconstruction following mastectomy is mandated by California Insurance Code 10123.8(d).  However, no mandates exist that allow a woman to choose her surgical team; no mandates exist for insurance companies to pay PPO rates to Non-PPO providers; and no mandates exist to cover the procedure inpatient at a hospital rather than at an office or surgery center.

Should complications arise during surgery, an outpatient surgery center is not equipped to handle situations such as blood transfusions that a hospital can quickly manage. Of further concern is the denial of coverage from insurance companies for performing this in-hospital with attending inpatient stay (minimum 3 nights), despite mastectomy with reconstruction being a major and intensely complex, prolonged (up to 12 hour) surgery with a high risk of sepsis that requires a sterile environment. While surgeons prefer mastectomy patients to be in-hospital for a full week after surgery, the maximum patient care at the moment is a 2 night hospital stay, and even that is not covered by PPO insurance automatically. The surgery takes up to 3 hours to remove the breasts, and another 6-9 to begin reconstruction. This is a very long time to be under general anesthesia, and the body simply cannot excrete anesthesia in 48 hours. It is medically irresponsible to release a woman in this condition, with surgical drains hanging out of her chest for 10 days after. Aftercare in a sterile environment is critical. There is also a month of bed rest pursuant, as a woman lacks the strength to even lift her arms initially, bathe herself, or engage in any sort of normal activity. Mastectomy actually qualifies for State Disability. 

While women of independent means are able to take themselves to aftercare facilities providing 24-hour surgeon-specific nursing and drain-changing, suture-checking, personal grooming and constant necessary monitoring, that is by no means within the average woman’s financial capabilities. No woman’s breast cancer recovery should be compromised because she can’t afford the best care for herself to restore health quickly. Cancer cuts across all lines. There are no demographic distinctions. California should not create them.

Similarly with regards to selection of reconstruction surgeon: a woman of resource can buy herself excellent reconstruction. A woman on her own in the system has no chance of coming through this with a non-disfiguring outcome.

In-network providers are frequently not board certified reconstructive specialists, and certainly not breast reconstruction specialists. All body parts are not equal. In order to have a good reconstructive outcome for any given body part, a patient needs a talented specialist. In-network providers are usually general surgeons, often with very little experience post-med school. Additionally, in-network providers claiming to be reconstructive specialists show ratings “below national average” on every independent physician-rating metric (please see attached spreadsheet) and their work galleries showcase various degrees of deformity.

Alternatively, when one looks outside networked care, it is possible to find excellent surgeons who are breast specialists with many years of experience, ranked at or above national average. Staying in network does not afford a woman equal care level, or any assurance she can complete required months of surgeries with body intact and normal looking. Very unfortunately for many patients, this means results are frequently physically deforming. This requires multiple additional surgeries to correct, and many women lack the resources for that as well as mental and emotional fortitude to continue. Continuing costs more to insurance companies long-term anyway, with repeated costs for all parts of surgery that could be avoided by authorizing and covering better surgeons at the outset.

Reconstructive surgery is not the same as breast augmentation, and there are very few talented breast reconstruction surgeons out there. The best breast reconstruction surgeons need to be incentivized rather than ostracized from the paying-network system. Achieving good aesthetic outcome has been amply proven to be a key factor in recovery from breast cancer, establishing for a woman a sense of vitally important bodily integrity. There are scores of psychological and medical research findings in peer-reviewed medical community journals as well as an abundance of anecdotal evidence all underscoring ensuing depression, social anxiety and isolation that occurs when women become ashamed of their physicality, uncomfortable in their own skin, and permanently disfigured after breast cancer surgeries. Surviving means not just having cancer surgically excised, but regaining confidence and comfort again in one's own body. 

Women are being recklessly abandoned by the system to become deformed and disfigured through in-network requirements and referrals to surgeons who are under-skilled, under-qualified, or simply not breast reconstruction specialists; requiring multiple additional surgeries to correct, at increased costs to patient and system, as well as vastly increased sepsis and death risks to patient. Insurance companies are failing to deliver on the promise of the 1998 WHCRA Act, operating fuzzily in an area of inchoate legal language. The time to be concrete is now. 1 in 8 American women is waiting.

Please sign and share, and help CA women with breast cancer diagnoses get the best care possible for themselves quickly; end bureaucracy around diagnosis, repeated insurance company delays and extraneous process, and vain-shaming of women just hoping to look and feel like normal women again after surgery, with a good sense of physical integrity after something they never asked for or gave permission to changed their bodies immeasurably.

Thank you.