Endometriosis – Time for a New Campaign

Time for a New Campaign – Election 2012

It’s been 11 years since the launch of the last meaningful Endometriosis Campaign, with the final tally of AB2028 and House Congressional Resolution 291.  The campaign efforts demonstrated that we, the Endometriosis Patients, were heard loud and clear – our Votes, regardless of our Medical Condition, were counted.  The Endometriosis Research Center  after proving themselves as a Political force to be reckoned with in their partnership with Planned Parenthood of America in the passing of AB2820 by the Senate Committee for Health & Human Services(2000), then went on to tackle the campaign for National Endometriosis Awareness on their own in 2001.  The ERC success resulted in the 107th US Congress, passing House Congressional Resolution 291 recognizing Endometriosis as a debilitating gynecological disease and officially removing the disease from the realms of Infertility, firmly planting Endometriosis in the Gynecological realm.

Ten years later and Women with Endometriosis still lose financial support if they lose their husbands and/or their careers in their struggle against the disease.  Ten years later and Endometriosis is still not independently recognized as a disability.  Ten years later, and Health Insurance providers still classify Endometriosis as an Infertility related disease and severely limit coverage of recognized treatments and methods.  For those in treatment, they often find themselves fighting their Insurance carriers.  Endometriosis remains classified as an Infertility related disease and unless women have a specific rider on their plan for Fertility coverage, they can not continue their treatment without insurmountable financial cost.  As in 2001, many women are still being kicked off their treatment protocols by Health Insurance carriers changing the classification on Endometriosis patients mid-treatment.

In the 1990’s and early into 2000’s, Planned Parenthood supported the Endo Community by providing the Birth Control Prescriptions we needed at the dosages we required.  This alliance provided Women diagnosed with Endometriosis the ability to actively engage in Medical decision making, providing them with the right to choose their own treatment and preserve their health and fertility .  It remains a fundamental premise in a Woman’s Right to Choose.  Over the past 13 years, the Endo patients who experience complex symptoms or require “special needs” for their treatment have been rotated out of the support provided by Planned Parenthood and by extension NAARAL.  Recently Planned Parenthood marched out a former Endo patient as evidence of their services, but that does not discount the number of women who have NOT found support thorough this group.  As Excision Therapy became the number one prevention and remission technique, the preservation of Fertility became a pivotal issue within the health care cost debate and a thorn in the side of the Pro Choice Movement.

The Abortion procedure most practiced within the United States and specifically at the facilities of Planned Parenthood is the Suction Aspiration.  The second most common is surgical D&C.  It is this D&C procedure that provided the base of the Pro Choice/Endometriosis alliance.  However, as Excision Therapy became more advanced, and research into Endometriosis continued, it became clear that scar tissue is a major player in the Endometriosis battle.  And therein lies the single defining issue that ultimately became the demise of the alliance with Pro Choice, and by extension, the marginalization of the Endometriosis Patient by Planned Parenthood.  The difference between “suction” and “excising” is a blade and the amount of scar tissue left behind on the uterine wall.  Endometriosis and Scar Tissue are quite literally the Sacred Marriage of Adhesions.  Forget the morality issues within the Pro Choice/Endometriosis alliance, because Planned Parenthood will never provide a D&C at their low cost clinics, and with Suction Aspiration the procedure of choice, Planned Parenthood is actively engaging in creating more occurrences of Endometriosis instead of lowering them, all in the name of cost savings.

As far as I am concerned, both sides, Pro Choice and Pro Life, have failed me and millions of other American Women.  Both sides are to blame for 13 years of stagnant movement in the Health Care Coverage and Treatment options for Endometriosis.  It is appalling that Excision Therapy is still coded by Health Insurance Companies as $8000 per surgery and that a Woman’s Uterus is worth only $16000.  The intentionally vague and ambiguous language of “gender specific preventative medicine” and the out right admission of no coverage for Infertility diagnosis in the Affordable Care Act PreExisting Condition Insurance Plan makes the Coverage Maze for Endometriosis that much more expensive and confusing.  As it is, one requires an MBA just to navigate the financial maze and a Medical Degree to navigate the Health Care maze.  The Endometriosis Patient is well versed in obtaining care, which brings the issue of a Woman’s Right to Choose into stark focus.  A Government sponsored plan which has no specific language or acknowledgement by the administering bodies is worthless and on the surface looks like just another way to extract more cash from already struggling Women with Endometriosis.  When the Affordable Care Act was being crafted, who from Pro Choice Lobby advocated for better low cost options for Endometriosis Treatment?  Who from Pro Life Lobby advocated for Endometriosis be categorized as a gynecological disease on the same level as Breast Cancer?  I can’t even begin to imagine the economic impact 20 million women diagnosed with Endometriosis and reclassified within the Affordable Care Act as having a PreExisting Condition will have on the Government sponsored plan if those of us who know the maze well work together to milk the Insurance Administrators of every dime the Pharmaceutical firms pump into their Lobby.  And believe me, we have the network to cripple the Government Health Care Plan with our Endometriosis Bureaucracy.

Now is the time for Pro Choice, Planned Parenthood, NAARAL, Pro Life and Conservatives  to pay up or shut up.  Pro Choice wants to use Endometriosis as their Cash Cow just like the Insurance & Health Care Lobby by marching out Endometriosis out onto the 2012 Political Battlefield and I believe we the patients should have a voice in our own Political Future.  Pro Life & Conservatives are on a Mission to end the Right of a Woman to choose by banning Birth Control, a key component in the prevention of Endometriosis and the preservation of a woman’s fertility.  The Republican Party is desperate to make President Obama a 1-term President.  The Democratic Party is desperate to battle each one of these groups to win the 2012 election and make President Obama a 2-term President.

Both sides need us, the Endo in the Middle.  Both sides uphold philosophies which directly impact Women, but also the medical treatments available to Women diagnosed with Endometriosis.  Furthermore, both groups uphold and present Legislation which impacts stage IV Endometriosis Outliers.  It’s time for us to get a little pay back for the use of our plight for Political Gain.

The Political backlash for not placing Endometriosis as an urgent item on the 2012 Agenda should be a complete lack of political support.  If the Pro Life and Conservatives want their ban on Abortion & Birth Control, we have the constituent base to assist them.  The measures the Pro Life/Conservatives are proposing directly impact the diagnosis and treatment options for Endometriosis and a Woman’s Right to Choose the Preservation of her Fertility.  If they want to limit treatment options on the front end, they need to be prepared to pay the price on the back end, and that includes Free Healthcare for Endometriosis Patients.  If Pro Choice groups are not willing to back the candidates who will propose legislation which protects Endometriosis patients and recognizes that Birth Control is not about avoiding or preventing pregnancy, but rather a tool used to preserve fertility, the Endometriosis Community has a constituent base to support them.  If they won’t, then we turn to the Pro Life groups to advocate Legislation for Lifetime Free Healthcare for Endometriosis in return for our collective support in banning Abortion.  These groups must face the consequences of their demands on the remainder of society and take responsibility for the ripple effect their philosophies have on society as a whole.  It is unacceptable that in a Republican led Congress we were able to pas Res291, but 10 years later we are hearing another Republican Congress discussing the elimination of one of our most relied upon weapons in defeating Endometriosis – Birth Control, and absolutely no alternatives proposed to fill the vacancy the proposed ban has on the disease.  The two sides have under estimated the size, scope, and interconnectivity of the Endometriosis Community, both on line and in the real world.

The Endometriosis Patient knows no race, color, religion or political party.  They are rich, poor and middle class.  They are high school drop outs and PhD’s.  The only demographic data Endometriosis calculates is gender.  Female.  The Endometriosis Community within the United States, is a diverse group Politically.  Faith is a central theme amongst these Women due to the suffering Endometriosis brings to one’s life in the form of Pain – emotional & physical.  An Endometriosis Campaign which strives to back the candidate most likely to support better treatment choices for Endometriosis and who will support legislation which focuses on prevention for future American Daughters should be the mission statement and focus.

There are millions of American Women diagnosed with Endometriosis who navigate their own Health Insurance Coverage maze and are all too familiar with the overall costs of Endometriosis in terms of financial, physical and emotional.  Both the tangible and the intangible negative impacts can be specifically demonstrated in the world of Endometriosis.  From the frustrating cycle of insanity with the Insurance Customer Service process; to the complex planning involved in scheduling a single treatment protocol over 90 to 180 days, Women with Endometriosis know all too well the overall financial impact.  It’s difficult enough as a single woman to navigate financial and medical and insurance processes, it is nearly mind boggling for women with a husband and family.  It is no wonder the Media has kept a lid on the Affordable Care Act specifics.  In between flare ups, the Endometriosis Community is bound to find out.  The longer you delay the information flow, the longer you can keep milking the Endometriosis Cash Cow.

I have been researching the cost of Endometriosis, based on several insurance options now available under the Affordable Care Act.  It is utterly ridiculous.  Wealthy people and financial investment professionals would laugh at these scenarios.  As per all of the estimates I have been researching on HealthCare.gov, the Pre Existing Condition Insurance (PCIP) is laughably unaffordable.  The insinuation of the Affordable Care Act and the Insurance Administrators of the PCIP is that women with Endometriosis should gain employment and secure income for the sole purpose of feeding the Medical Mania a monthly ransom of $700-$1000.

Average Premium Cost per month for a single person 45-54:
$499 (x12 months = $5988)

Annual Deductable: $1500-$3000

Without an office visit or treatment costs, the annual cost for health care is $7988, or roughly $670 per month.  Health Care for the cost of monthly rent on a small apartment in an Urban area, or about half the average monthly mortgage payment on a decent sized home.

Each Engagement with a Physician is a $25 Co-Pay.  Laboratory and Diagnosis* (interpretation of the Lab work) are both a 20% Deductable

Specialty Drugs, such as Lupron, are $300 per prescription.  Add to that cost the of the office visit for shot administration and the average 3-month round of treatment for Endometriosis is $975

*It should be noted that the diagnosis of Infertility is not covered by the PCIP, and as long as the Preservation of Fertility is considered “Infertility Treatment” Endometriosis will not be covered, at all.  For women under 30, the Political Fight over Birth Control will severely impact their ability to manage the progression of Endometriosis at low cost.

This is why we need a new Campaign for 2012; one which demonstrates our history of Political Success and at the same time demonstrates our skill at surviving the Insurance bureaucracy of Endometriosis.  Where was Endometriosis during the crafting of the Health Care Reform Bills?  Who stood up and promised to preserve a Woman’s Right to Fertility?  Even the Radical Liberals have abandoned Endometriosis, what kind of doomed future does Women’s Health have for American Daughters?

Social Media Resources – Endometriosis

Endochick – Endometriosis the Silent Life Sentence

The Endow Me Foundation

Endometriosis Research Center


Twitter Feed:

#Endometriosis; #Endo; #EndoChat; @onagh/endonetwork; @Tricia_td/endometriosis; @endosisters/endopages; @geripinto/endosisters


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