Sunday, November 23, 2014

It's a Real SHAM!

Here is my full response to the LA Times Op Ed from last week.  Read it and weep for the 11,000+ women who were on this clinical trial and the lack of respect  these two have for other females and the inaccuracy of their portrayal of the two day FDA hearings and content.





The Real Sham : Denying the validity of women’s sexual dysfunction
Amanda Parrish, Nashville, TN
I cannot begin to express my outrage after reading the Op-Ed in the LA Times on November 14, 2014 titled “The sham drug idea of the year : pink Viagra” and it’s total disregard of women’s ability…and right…to make choices with regards to their healthcare.
I am a 51 year old professional, full time working mother of four, stepmother of two , wife, daughter and most importantly a woman who suffers from Hypoactive Sexual Desire Disorder.  Throughout my life I have sought and benefitted from wonderful therapists/counselors.  I enlisted the help of a therapist for my four children during and after my divorce.
Just as countless other women who seek counseling, I also have used prescription drugs to help the biological chemical imbalances in my brain. I know my body well enough to know when I could benefit from counseling or when I need a prescription drug.
In August I saw a tweet about the FDA discussion on HSDD and the lack of approved choices for women. I registered as a patient THAT DAY, unsolicited by anyone but myself!  I booked my flight and hotel and requested my vacation time. 

Now, back to Ellen and Leonore’s Op-Ed claims:
       Yes! 
I am 51 and my body is changing.  I have lost the majority of my estrogen production so I wear an estrogen patch.  I also am low on thyroid so I take a supplement.    No amount of therapy can replace my lack of estrogen or thyroid. I am physically fit , otherwise healthy and although I am not afraid of aging, hope to live another  40 years.
        No! 
I do not have a relationship problem.  In fact, at 51 and 58, we are both very communicative and open with each other.  Having learned from our first marriages, we have the distinct advantage of maturity and commitment on our side and are mindful of the need to nurture our relationship.
        YES! 
There is an UNMET MEDICAL NEED with regards to the lack of desire for sex. As I stated earlier, I have no trouble with arousal.  Once started, no trouble.  The trouble is in not having the desire to start. I am as attracted to my husband as I was the first time I saw him but still, there is not the desire I once had.
        ROWDY?
The FDA meeting was “rowdy”.  Rowdy?  Hardly.  Robust more accurately describes the meeting. As a matter of fact I would say the only “rowdy” presentations were those coming from the critics: in fact I was appalled that one of them went up to the public microphone and suggested I “get a new boyfriend” or “eat some chocolate “ to overcome this.  I’m not sure how my husband would react to this suggestion!
        The participants were “coached” by drug companies.  “Coached” to demand drug solutions?  Honestly!  I am a 51 year old woman suffering from HSDD and entered a study voluntarily…I didn’t need to be “coached”.
        Yes! 
I proudly wore my “womendeserve” button and scarf…and why shouldn’t I?  We wear red ribbons in honor of AIDS research, pink in honor of breast cancer…none of which, by the way, can be cured with therapy.  Why shouldn’t we show our personal support for an FDA approved option?  No once forced me to wear it.  I CHOSE to as currently, there is no option for me short of off label testosterone ( which I tried but found it worked better in the work -out room than the bedroom ) and carried a host of, let’s say, unwanted side effects like growing a goatee, aggression issues and adult acne not to mention the potential for growing male-like body parts!  No thanks, my husband has one of those and one is enough for us!
        Flibanserin didn’t work and was unsafe.  Untrue!  Proper regulation?  ON what basis do they say this?  I took the drug and it worked.  In fact, I see from the published trials that it beat placebo on every endpoint. The FDA just approved a drug for curved penises whose top side effect is penile rupture!!  Are you KIDDING me?  Ill chance a headache, dizziness and a little fatigue any day.
        Yes! 
The FDA HAS approved 26 drugs for male sexual dysfunction.  It doesn’t matter that they are versions of similar drugs; the fact is they said YES to each individual new drug review.  They did so knowing the risks associated with them  because they felt comfortable turning over the decision to use or not to use the product to a man and his provider.
        Sorry! 
The “biological lack of desire to have sex” has negatively impacted my life  and I want it back!
        Why is it unethical and unscientific to attribute a couple’s discrepancy in desire to a woman’s biological defect when we attribute it to men’s defect EACH AND EVERY DAY??  Hello?? ED??  LOW T??
        As for pharmaceutical companies pursuing sexual well -being drugs for women with diabetes, MS or spinal cord injuries?  Au contraire! Why would they?  They can’t even get a drug approved for women without severe medical issues!!  Why would they invest the years and billions of dollars only to be told “sorry, the effects were modest” so thanks for playing but NO? Perhaps these ladies would donate millions from their therapy fees for the research of such drugs.
The facts are simple.  Flibanserin has been studied for over 12 years in over 11,000 women and was found to be effective and safe.  As a patient, I can tell you that for my husband, initiating sex with him is a HUGE turn on.  Far better than obligatory sex.  On the drug, sex was SIGNIFICANT and MEANINGFUL.!
As for these advocates of therapy or accepting your aging body, consider this.  One therapy session per month costs at least $125.  That is NOT going to fix a brain chemistry problem.  But if a woman decides therapy is right for her, at least she is able to seek help.  Those of us for whom therapy has not worked, we are left empty handed and short changed. 
In conclusion, I am extremely grateful to the many counselors/therapists who are active supporters of an FDA approved prescription that they can offer to their HSDD patients IN CONJUCTION with therapy or as an ALTERNATIVE. I appreciate that for them good medicine and genuinely helping their patients is more in line with their Hippocratic oath than the authors of the op-ed who reveal their agenda to protect their fees by saying this is all in my head.

 I would like an FDA approved therapy to address my HSDD which will minimize my distress, embarrassment and help restore my femininity so my husband and I can enjoy the flirty and intimate relationship we once had and plan to have for a long time. Further, I would appreciate it if these therapists would neither speak ON MY BEHALF nor JUDGE the efforts of eventhescore.org /womendeserve.org. Why do they bother you?  Perhaps as a therapist you can help uncover why you are so threatened by their existence.

No comments:

Post a Comment