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Giannini: Things My Mother Taught Me…Happy Mothers Day

Wednesday, May 06, 2015

 

With this week being Mother's Day, I can't help but feel sentimental. My mom, Margaret Del Sesto passed away in October 1999 from Ovarian Cancer.  I wish I could say she didn't suffer but I can't. Ovarian cancer is a painful disease and a silent one. It strikes silently and is deadly. There really are no warning symptoms until the cancer has spread.

My mom was diagnosed with stage 4 ovarian cancer. I remember when and what time of day and how devastated we were. It was near Christmas time in December of 1998. After several months of me taking her back and forth to the emergency room and doctors, she was finally diagnosed. At that time, there wasn't much talk about ovarian cancer or its dangers. There is no test for ovarian cancer or screening process. Yes, there is a CA125 blood test to detect abnormalities, but it is not conclusive. And sometimes, insurers will not pay for this blood screening. I know because I've had the test and had insurers refuse to pay even though I am at high risk. I've had to fight to get the test paid for even though the doctor ordered it.  

In 1971, President  Richard Nixon declared war on cancer. I wish we can say we made a dent.

But I don't think we have. Just this week, I heard of a another friend, a young mother, dying of ovarian cancer. She wasn't diagnosed until stage 4. She has fought this battle for 5 years now.

Yes, the woman with ovarian are living longer but it still is a very lethal disease.

In 1999, I introduced the Ovarian Cancer education act in the General Assembly which passed into law. The law was to set up educational programs to teach woman about the symptoms of Ovarian cancer and provide free screenings for  woman and young girls to inform them of the silent symptoms of ovarian cancer. Education is key in the diagnosis because symptoms are silent.  They resemble other minor illnesses, so they are ignored. Symptoms include fatigue,nausea, menstrual changes , back pain, cramping and bloating. Sometimes these symptoms are mistaken for other things and ignored.  That is why education is so important.

There are no screening tests for ovarian cancer like there is for prostate cancer. I don't know why they can't develop a screening test but that angers me. They sure got one for prostate cancer.  More has to be done to stop this deadly disease. Screenings have to be developed and paid for by insurers. I'm tired of all the excuses and I'm tired of health insurers requiring strict guidelines for woman to get tested for cancers. Doctors are having a tough time ordering tests for patients because health insurers will not cover the cost.  

We all have read the actions taken by Angelina Jolie and her surgeries to prevent ovarian cancer because she is at high risk.  What you don't read is how these surgeries and  the tests she is having are being paid for. Is Jolie paying for these surgeries herself or are health insurers?  I'm curious because that brings up another question.

Is this country only offering health treatments and precautionary surgeries for the very rich who can afford to pay?  If Jolie is paying out of her own pocket for these surgeries and test because it  certainly is costly but let's face it, she can afford it.  If her health insurers are paying then please let me know what health coverage she has, so  the other woman in this country can get it.  And yes, I think Angelina Jolie is courageous for bringing the issue forward but I think the real issue here is more than having surgeries to prevent cancer.

The real issues concern the fact that there STILL is no screening tests for ovarian cancer and that health insurers have to PAY  for more screening tests for woman to be diagnosed.  Not everyone can be tested for the gene that determines if you are at high risk because the insurers will not pay. This leaves so many woman in the dark on this issue. Is there anyone in congress ready to take this on?  I wish there was.  It's a powerful lobby, the health insurer industry.

As someone who fought to have insurers cover the freedom of choice prosthesis bill  ( letting amputees pick their own prosthesis provider) for years, I can tell you it us not easy to get these bills passed. That took at seven years to get through, not to mention other health coverage bills I introduced.

I know I sound like a frustrated former legislator. But this country is going in the wrong direction with healthcare. There are more cancer victims diagnosed daily. There are more people suffering from deadly cancers. More diagnostic tests need to be done to prevent late diagnosis of patients. More tests have to be paid for by insurers, so these tests can be ordered by doctors.  Doctors need to have the proper tools to give an informed diagnosis.  

All woman need to be able to have precautionary treatment and tests, not just the rich or famous. And cancer should be something that we can have all the precautionary treatment possible, especially for high risk patients.

I know my own mom suffered for several months before she was finally diagnosed. And the stories of other woman who suffered the same plight come to mind. The late Gilda Radner died from Ovarian cancer at an early age but not before she started the Gilda Radner Institute which has been instrumental in the education of ovarian cancer and the advocation for a cure. Even through her pain, she found hope in starting an organization to help other woman suffering from this disease.  Two thirds of the woman diagnosed with ovarian cancer in late stages die. That's not good odds.  We need to change this.  We need to speak up to our health providers and elected officials that this has to change.

They found a test to detect prostrate cancer, now they need to  find one to detect Ovarian. It's Mothers Day this Sunday, and my hero is my mom. She wasn't a politician, she wasn't a movie star or an executive.  She was a part time jewelry worker who worked while we were in school from 9am to 3pm to help put food on the table and pay for us to go to Catholic school. She brought us up to respect others, work hard and always say how we feel.  She was a good woman, just like many of your moms.  Her children came first, and she went without to make sure we had uniforms for school, books and proper shoes.  

My heartbreak in life, was that she had to suffer from such a painful disease. I thank God that at the end,the  pain diminished and we were with her but I still feel remorse that there wasn't more I could do at the time.  I tried visiting every ovarian cancer doctor possible at all local hospitals, but  the cancer was too advanced.

There's an old saying in politics, when you're in your a guest, when you're out you're a pest. I've found that to be very true but that won't stop me for advocating for change.  That's the best Mother's Day tribute I can give to my mom.

She deserves no less. Happy Mother's Day to all and to all the woman battling cancer!  This tribute is for all of you!

Joanne Giannini served as a RI State Representative from Providence from 1994 to 2010. She has previously written commentaries for the Providence Journal and the Federal Hill Gazette. During her tenure in the General Assembly, she made appearances on CNN, Primetime News, and American Morning regarding legislation she filed in Rhode Island.

 

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