HELP !!!!!!!!

My grandmother always said, "God never gives you more than you can handle". 

I think that may be true. 

I guess we have go learn to handle what the world throws at us. 

Then again in the the words of Patrick Swayze in the movie Roadhouse  "it is amazing what you can get used to".

In any case this blog is a very simple one. 

I am begging for your help. 

The following appeal was written by my friend and partner of almost 20 years, John Aquilino, Jr. 

It has to do with my wife, Lori and a recent development that has devastated us and her in her fight aginat metastatic triple negative breast cancer "tnbc".

For those of you who read this blog regularly and have followed  Lori's incredible fight John's story will hopefully galvanize you to action. Lori needs your help. We need your help. 

And for the tens of of thousands of women around the world who have or may someday face this dreaded disease called "The Beast" we pray you will respond.

We need you to crash the webs sites below and to tie up their phone lines and to write so many letters they can not handle the load and they, be it UHC, the FDA, whomever, will do whatever it takes to get UHC to start to pay for Lori's treatment using Avastin again. 

                                     Lori is winning. 

        Her cancer is in retreat and now they want to pull the plug. 

                         This is Lori during Thanksgiving 2013. 

Thanks. Please act today, Do not wait. Lori cannot afford to wait. 

 TNBC HOPE & Plea for Help: by John Aquilino, Jr. 

There is real hope for women with metastatic Triple Negative Breast Cancer.

The Good News:

Dr. Joyce O’Shaunessy devised a combination of drugs for Lori Jean White, a patient she is treating at Baylor Charles A. Sammons Cancer Center in Dallas, Texas.

The trio of Avastin (bevacizumab), Halaven (eribulin mesylate), and Xeloda (capecitabine) is working.

Lori’s tumor markers have receded from 75 to 50.  Her brain mets are virtually non-existent and a 4 cm tumor on her liver is shrinking.  This is not a cure…but it is beating back Triple Negative Breast Cancer and extending Lori’s life until research in immunotherapy can defeat cancer once and for all!

Despite an initial four month “expriation date” decree, in February 2011, Lori White has survived for 37 months after being treated at Maryland’s Suburban Hospital, MD Anderson in Houston, clinical trials at Johns Hopkins, Georgetown University, the National Cancer Institute and Mary Crowley Cancer Research Center in Dallas.  

Regardless of the treatment prior to Dr. O’Shaunessy’s Avastin, Halaven, Xeloda combination, Lori’s brain mets reoccurred followed by the liver tumor. Now with this treatment they have receded!!!!

The Bad News:

United Health Care now refuses to pay for the Avastin – an out of pocket expense in excess of $15,000 a treatment claiming FDA does not approve of Avastin to treat breast cancer and that the O’Shaunessy treatment is “experimental” in spite of the fact that it is working.

Background:

 Avastin years ago proved its ability to inhibit metastatic breast cancer.  In 2011 an “outside” advisory group persuaded FDA to revoke approval of Avastin to treat breast cancer due to their conclusion that the literature showed no benefit of extending or improving quality of life while never denying it did slow the progression of metastatic breast cancer.

United Health Care used that questionable conclusion to determine that the combination of drugs “has not been proven to be effective in the combination requested.”  They are blatantly ignoring the success of the therapy for Lori White and another of Dr. O’Shaunessy’s patients.

United Healthcare’s Duplicity

In its mission statement, UHC claims “our mission is to help people live better lives.”  UHC boasts of its role of “Innovation” saying it devotes “our collective resources …to continuously testing new, targeted ways to raise the bar in health.”  Its corporate “Code of Conduct” lists five values it says drive the company: Integrity, Compassion, Relationships, Innovation, and Performance.” 

Without Avastin in the chemo “cocktail” prescribed by Dr. O’Shaunessy, Lori White will die.  By denying Lori White this three-drug combination, United Healthcare is condemning tens of thousands of other women to die.  Is that Compassion?  Is that integrity? 

That same Code of Conduct says UHC “always acts in the best interest of our customers, consumers and community…”  Is condemning one or ten thousand women to death in their “best interest” or the “best interest of the community?”  The UHC Code of Conduct brochure has a headline blazoned across it: “Never Compromise Ethics.” 

Dr. O’Shaunessy’s treatment using Avastin, Halaven, and Xeloda in combination is working were other therapies failed.  That combination has the potential of extending and saving the lives of countless TNBC afflicted women.  AND UNITED HEALTHCARE SAYS…WE DON’T CARE!

WHERE ARE THE ETHICS IN THAT!

We Need Your Help!

Last year UHC earned $7.3 billion dollars on revenues of $113.8 billion dollars. 

United Healthcare cares about their profits, not about your lives.

Make them feel your outrage.  It’s time to flood their phone lines and mail room with the demand that they pay for this important therapy.  They need to hear from you so other TNBC patients might live.

Call them.  Write them.  Send this to your local radio, television and social media outlets.

UHC from the top executive to its appeals unit needs to hear your voice.

Tell United Health Group & United HealthCare to:

·        Pay for Avastin for Lori Jean White Member ID-913018014:

·       And save countless TNBC patients’ lives

United Health Group CEO – Stephen J. Hemsley

800 328-5979

PO Box 1459

Minneapolis, MN 55440

United Healthcare CEO - Gail K. Boudreaux

866 633-2446

UnitedHealthcare Appeals Unit

PO Box 30573

Salt Lake City, UT 84130-0573

FAX 801-994-1083

Tell the FDA –

·       Approve the use of Avastin for metastatic breast cancer

·       Tell United Healthcare to pay for its use against breast cancer

FDA Commissioner – Dr. Margaret A. Hamburg via her Executive Assistant Angela Hoague

·       Angela.hoague@fda.hhs.gov

FDA Assistant Commissioner for Women’s Health – Marsha Hendersen

·       301 796-9440

·       Assistant Commissioner for Women’s Health

FDA

10903 New Hampshire Avenue

W.O.32-2333

Silver Spring, MD 20993

A Gathering Storm

Another crazy week as we move closer to finishing the installation of all the equipment, paddle wheels, and blowers on module 1 and get ready to start stocking our first ponds within the next 30 days.

We have already started installation of module 2 and are pretty confident we will have both modules up and operating (and stocked) by late summer, early fall.

As we move forward to increase production by building additional production modules, these first two modules and all the supporting infrastructure they required should prove to have been the most difficult and the most expensive. As the old adage goes, "learning isn't cheap". 

The "winter that refuses to leave" has put us at least 3 months behind from where we wanted to be at this time. 

That said, the water temperatures are rising in the bay and ambient air temperatures are rising so we should have the optimum environmental conditions we want as we begin to bring in the first water for the ponds. 

Modules 3 and 4 here in Texas should go up much faster and with a significant reduction in cost.

The company web site is being handled by professionals now so for details on our progress you can go to: globalbluetechnologies.com

On a much more important front, conditions for a potential storm are gathering between "Team Lori" and United Health Care (UHC). 

"Team Lori", is the moniker we use for all of the individuals (human and four-legged), that spend countless hours every day working around the clock to save Lori's life from this metastatic "TNBC" she has been battling for 37 months. 
                                             

(Above is Sophie and a few of the other poodles with their "Team Lori" t-shirts, which they wear on chemo day.)

As all of you have read, under the treatment of Dr. Joyce O'Shaugnessy and her incredible team at Baylor Cancer Center in Dallas, Texas, Lori has seen dramatic improvement in halting the spread of her cancer.

Several months ago when the ONT-10 vaccine trial Lori was in failed to halt the progression of the cancer in her brain as well as the cancer tumor in her liver and kidneys, Dr. O'Shaugnessy developed an experimental combination of chemo drugs combining Zoloda, Halaven, and Avastin, and started Lori on it. 

At first Lori's tumor markers jumped upwards but Dr. O'Shaugnessy was pretty confident that was the new chemo combo bursting tumors. 

Since then for the past several months Lori's tumor markers have gone down and down dramatically. They had gone as high as 80 but today in Dallas at Baylor her new tests showed a third straight (another 15 points down) drop in her tumor markers which are now down to a rating of 50 and her MRI showed no progression in her brain. 

The chemo cocktail is working and for the first time in 2 years Lori's cancer is being driven back. (And yes, prayer does work).

No this is not a cure, but it is an extension of her life and is buying her time to hopefully get her into a state of remission and maybe, (with enough prayer) and under the genius of Dr. O'Shaugnessy buy her time for a new clinical trials in immuno-therapy to emerge.

This is not only incredible miraculous news for Lori and her team but this could hold promise for tens of thousands of woman who have to face the deadly form of breast cancer called triple negative and nicknamed the "beast". 

Simply put this gives Lori and others like her - HOPE.

So, why is a storm brewing? 

Because "United Health Care Insurance Company" to whom (or is it to "who") we have paid expensive monthly premiums for years and years, as of a month ago started denying payment for Lori's avastin.

Without that insurance coverage this means an "out of pocket" cost of about $30,000 a month for each treatment. And as it is the avastin in combination with the other two drugs that has seen Lori actually begin to beat this very aggressive metastatic demon cancer, not providing her the avastin is tantamount to a death sentence. 

Dr. O'Shaugnessy has appealed to the UHC board and we are awaiting their decision. 

Obviously we and everyone who is aware of Lori's battle is praying that UHC will do the decent, ethical, and right thing, and reverse their decision and continue to cover Lori's current treatment.

If not, I promise everyone the storm will come. 

I have no idea how other people in similar situations deal with this kind of blow. 

That said, the effort that will be made to get Lori's coverage reinstated, to have UHC continue to pay so Lori can use Avastin in concert with Halaven and Zoloda, (which hopefully will be a  combination that other women with "tnbc" metastasis can obtain and have insurance coverage for as well), will become a campaign that will make the siege of Carthage by Hannibal look like a Saturday night "bingo" game.   

Stay tuned. 

On a more positive and happier note, Charm my Arabian mare that I was blessed to have come into my life when she was six months old and I was still living in Michigan, turned 29 this past March. 

Here she is enjoying the second week of spring in Maryland. 

Yes, I said the second week of spring. 

This has truly been the "winter that refuses to leave".