Do I have to disclose?
Feb 1, 2006
Greetings, I first want to take a moment to wish your brother and mother strength and hope in dealing with their cancer as well as strength for you to continue offering them the support and love they need during such a heartbreaking, extremely difficult time. I know all to well what it is like not only to have cancer, but to have loved ones with various forms of it,having lost some to death, but victoriously helping others in their battle and win away from its grasp. This is mommy of three sending you my heartfelt love, thoughts and support, as you, kind friend, have always offered it to us in a world that in its majority shuns positive people.
My question is: Although it is always recommended that a person disclose to his physician and/or dentist his status, if one so chooses, do we have a right under the law not to? I was discriminated against by a dentist, and although I know that that in and of itself is against the law, I have not had so much as a cleaning because I am literally terrified of the embarrassment and humiliation once again. Do I have a right not to disclose or are we forced to disclose even when we do not want to? Are we obligated by law? In their questionaire can we answer no even when it is yes in order to protect our right to privacy? I cannot tell you how this, that may seem like a simple thing, would ease at least one of my overwhelming concerns and fears.
I want to thank you for taking a stand on behalf of all of us who suffer from this disease. Your unselfishness and courage is an example to all. You not only educate us by opening up such a personal part of your life, but teach us that we should never lose hope... We can continue living... Just keep believing and anything is possible. We live in a world where it is so easy to look the other way and maybe it will all go away. You too have a difficult life and yet you are out there educating and helping others. People like us desperately need not only the financial support, but the physical and emotional help as well and yet although there seems to be so much money to go to war and furnish the lavish lifestyles of the rich, cuts are continuously being made to programs that help people that are desperate to continue living as normal and productive a life as possible. Although I wish I had the funds to help wonderful programs like yours, I do find other useful ways to contribute to such worthy causes. We can all contribute in some way.
Thank you for your time in reading this email. I cannot tell you what it means to have someone standing by me, that can understand what I go through, and can help me to go on. I too am here for you.
Anxiously awaiting your reply, Mommy of three
Response from Dr. Frascino
Thanks for your kind words, good wishes and support!
Being "literally terrified of the embarrassment and humiliation" related to HIV discrimination to the point you are neglecting your health care ("have not had so much as a cleaning") is indeed a sad and unsatisfactory situation.
The reason to disclose HIV status or any medical condition to your health care provider is to allow them to better care for you and certainly not to engender their judgmental and sometimes illegal discriminatory behavior. Knowing that someone has HIV or diabetes or penicillin allergy or whatever may be critical to how another medical condition is diagnosed, or medical test is interpreted or even whether a specific treatment should be prescribed. I'm not as worried about your "right to privacy" as I am about your right to optimal health care. Certainly you have a legal right to both!
Optimally I would suggest you find a health care team (physician, dentist, pharmacist, etc.) that are HIV sensitive and knowledgeable. There are a variety of Web sites that can help you locate these health care providers. Once you have one you trust for instance an HIV specialist he or she should be able to give you recommendations for other sensitive and knowledgeable providers (dentist, ob/Gyn, counselors, etc.). Try the American Academy of HIV Medicine Web site (www.aahivm.org) or the GLMA (Gay Lesbian Medical Association) Web site. Both have a find-a-provider function that should help. If for whatever reason this doesn't work out for you and you wind up in a generic dentist's office facing one of those questionnaires asking if you have AIDS, I would recommend you merely leave that question blank. If the dentist or hygienist asks about the blank, merely say, "I would assume you take all the necessary precautions mandated by the universal precautions guidelines whether a patient is or isn't or perhaps doesn't know his HIV status, right? So let's proceed with the cleaning or whatever."
Living with HIV is hard enough. There is no need to put up with other people's ignorance and certainly no reason to allow discrimination to negatively impact your health.
Isn't it time we turned the tables on the bigots? I have a friend who made such a ruckus in the waiting room of a dental office when his chart was flagged with a large "AIDS" sticker and he, as well as the rest of the folks in the waiting room, heard the staff discussing the need to be extra careful when rooming him for a routine dental cleaning. He went ballistic, and by the end of his diatribe, everyone in the waiting room left without being seen. He also alerted the local AIDS service networks, the American Dental Association and AIDS legal service. You wouldn't believe how apologetic that dentist has become.
Mommy of Three, I do hope you are broadening your support network locally. There is strength and comfort in numbers. Don't try to go through this alone. Bring a loudmouth HIV-positive friend with you if you're shy about speaking out for yourself in these types of situations. If I lived near you, I would love the opportunity to enlighten the institutions and professionals who have caused your fears.
Good luck. Remember I'm with you all the way. Now go get those teeth cleaned!
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