Dear Inspire Community Members,
We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting these interviews in a Q&A format in my Journal as a news feature for Inspire community members.
I recently interviewed cancer survivor Bonnie Diraimondo, a patient advocate, author, and speaker on the topic of HPV (Human Papillomavirus) and cervical cancer. She is the author of the book, Any Mother’s Daughter, which details her struggle with HPV. Organizers of the International Papillomavirus Conference have invited Diraimondo to speak at the opening ceremonies. The conference will take place this fall in Berlin, Germany.
Diraimondo is a member of the online support community of the National Cervical Cancer Coalition (NCCC).
Inspire: When were you first diagnosed with HPV?
Diraimondo: I've been a registered nurse since 1983 and I spent the majority of my life living in New Jersey until relocating to Florida in 2002. I was initially diagnosed with HPV in 1987, which, at that time, involved vulvar dysplasia. It has since gone on to involve the cervix, vagina, and anus with two invasive anal cancers both of which I have survived--so far.
Inspire: What made you want to write and speak on this topic?
Diraimondo: I wrote my book because after two decades I found that there was still too little accurate information available regarding HPV. It is quite an honor to have your work endorsed by and foreword written by the Nobel Prize winner who won for actually discovering that HPV caused cervical cancer. I started my website and blog two years ago to provide medically accurate info and the site is registered by HonCode, an organization which certifies online medical info accuracy.
Inspire: Tell us more about the conference this fall in Berlin.
Diraimondo: The International Papillomavirus Conference has been held each year for the past 26 years. At no time has a patient ever been requested to participate in the conference, let alone to speak and at the Opening Ceremonies no less. This is truly an honor as the Opening Ceremonies draw 1,400 of the world’s most prominent researchers, clinicians and other experts in the field of HPV. At this point, I am considered an expert in the field as well--otherwise I wouldn't even be qualified to speak to such a group. It is very promising that such a group desires the patient's perspective as they move forward in their research and clinically addressing HPV in the patient setting.
Inspire: What key message do you want to deliver to those attendees?
Diraimondo: The medical community in general, perhaps not these 1,400 individuals attending this conference, does not place enough emphasis on educating themselves and their patients about HPV, and medical professionals can literally be jeopardizing the lives of their patients by providing inaccurate information. It’s one thing to provide no information but it’s another thing to provide inaccurate information.
Inspire: Do you think you’ll feel a weight of responsibility for speaking for patients like you?
Diraimondo: I do feel a significant burden of responsibility. The onus is on my shoulders to speak for the patient community. I want to convey to them, that as a result of their status within the HPV community, they are able to bring about the swiftest changes when it comes to both work on a therapeutic vaccine as well as the education of practicing physicians, which is desperately needed. Far too many physicians fail to recognize the potentially lethal complications of this virus.
Inspire: How would you define an empowered patient?
Diraimondo: I’d say it’s someone who actively seeks to educate themselves regarding their condition to as close a level of their physician as possible, who has found their own voice and can advocate for themselves and who is not afraid to disagree with nor confront a physician when it comes to their care and treatment both physical and emotional.
Inspire: You are a medical professional, and are unsparing of criticizing the medical establishment for how it treats patients. There are, however, some doctors whom you recognized in the “Acknowledgments” portion of your book.
Diraimondo: Despite the number of grossly incompetent physicians whom I had the unfortunate experience of dealing with along my cancer journey, there were still that handful whose true compassion, empathy and willingness to do their utmost for me, regardless of financial circumstances, as a patient truly exemplified what a physician should be. It is those doctors whom I acknowledged in my book.
Inspire: The Inspire community as a whole is made up of about 180,000 members, who are involved in support groups of all types. What advice do you have for people who feel overwhelmed in the healthcare system, regardless where they live, and regardless of their condition?
Diraimondo: At times, it feels as though the individuals who are part of a system developed to aid you with your health issues are there to simply give you a difficult time and make you jump through as many hoops as possible. This can quickly wear one down and often, this is exactly what they want.
So for those feelings overwhelmed and perhaps abused within the healthcare system I would first acknowledge to them that they are not the first and unfortunately without significant reforms, will not be the last--but when you cannot get in through the front door you sometimes need to choose the back door. What I mean by this is that whether it be within a doctor’s office or a hospital medical center, there are always others operating behind the scenes who may assist you in getting what you need so don’t be afraid to utilize them. Try to stay within the chain of command when possible although sometimes it may be necessary to just go straight to the top depending upon your situation and results you have received thus far. It can be very frustrating and does take persistence. You do get more flies with honey, as they say, and logic can be a very effective tool. Regardless of how you handle it be sure to document everything including the name of who you spoke to, their title and department, dates, content of the conversation and results achieved. No one can be held accountable if you cannot remember their names.
Inspire: Patients often feel they can’t navigate the system, even if they have the documentation, the wherewithal, and even have the contacts.
Diraimondo: There are times when you will have to fight, via complaint letters to medical associations, for example, to get what you need. You must remember that all medical organizations have billing departments and someone who is ultimately responsible to assist patients when it comes to finances. These are the individuals who can negotiate bills, adjust off balances on an account, agree to accept your insurance as payment in full, despite them telling you that insurance prohibits this that is untrue.
Even managed care companies recognize the necessity on occasion for a medical establishment to alter their standard policies to benefit patients in financial need. So long as this is not done to an abusive level, it is indeed acceptable. Non-profit hospitals are required in order to maintain their tax-exempt status to provide a certain amount of charity care to patients. You may need to get past your own ego and accept help when it is available in order to defray costs elsewhere.
The Internet can provide a plethora of useful information however you must be sure the site you are utilizing is either a federal or state site, research documented in reputable journals, or the site is certified by HONCode for medically accurate information.
Inspire: Any final advice for patients are caregivers?
Diraimondo: Above all, do not put anyone above yourself in terms of importance. Don’t put the doctor on a pedestal. Kick him off. Put him on the same level you are, to the extent that you can. Get copies of your medical records. There’s nothing that says you can’t educate yourself about your disease. Every life has value and that value is not based upon one’s title or status in an organization. Advocate for your life as if it were the most important thing in the world, because it is. Refuse to be demeaned or degraded and call anyone and everyone that may do so on the carpet.
Edited May 6, 2011 at 8:35 am