Negotiating Medical Bills

Cancer cannot only devastate the body , it can devastate the pocketbook as well. I know from personal experience. So in this entry I would like to educate people on something few know about but certainly anyone with cancer should regardless of its origin.

There is a federal law referred to as Hill-Burton. Within this law, hospitals are allowed to maintain tax-exempt status in return for providing a certain amount of services to patients who could otherwise not afford them.

Virtually every hospital has a Financial Services Department. This is the department you should be communicating with, not the billing or collections or any other department!

Request financial aid/charity forms and let them know about your situation. There are guidelines and unfortunately, there are maximum incomes as with most programs but for many, this could be a Godsend. Many hospitals, once approved, will then waive any co-pays, deductibles and co-insurances beyond what your insurance will pay. This is one way to keep more of the money that YOU desperately need. You will need to get past any ego issues about asking for charity but most people in this situation are far beyond that anyway.

You will need to provide documentation but it isn't really all that complex and certainly nothing compared to what you need to provide to file a bankruptcy.

In the coming weeks a number of other financial topics will be discussed here, including negotiating COBRA payments with your hospital, ways to obtain medications at no cost, and yes that dreaded subject - bankruptcy. I hope you will join and contribute any programs or organizations so I can compile them within the website www.thehpvsupportnetwork.org. It certainly would be much easier to do a "one stop shopping"now wouldn't it?

FDA Approves Gardasil to Prevent Anal Cancer!

When Merck released the Gardasil vaccine it was initially touted as the preventative for cervical cancer. Unfortunately all these years later this is all that most people associated both the vaccine, and the virus (HPV), with.

What most people don't know, is that in the interim, the FDA approved the revision of the insert provided along with the vaccine to include protection/prevention of VIN (vulvar intraepithelial neoplasia) and VaIN (vaginal intraepithelial neoplasia). It has been a struggle to get the FDA to recommend revision yet again to include AIN/anal cancer. The FDA wanted four years of data before making such a decision something which only became available last year.

In November of last year, the FDA held hearings to determine whether or not to include anal cancer along with it's prior revisions. Luckily and thankfully, they made the right decision. Having gone through two cases of invasive anal cancer caused by HPV I have long known that if the virus strains which caused the other dysplasias/cancers could be thwarted by this vaccine that so should anal cancer. I didn't need four years of data to know that. But, the FDA being what it is seems to rush some things to market too quickly and linger too long with others. This should have been a slam dunk years ago and I seriously must question the thinking of those overseeing these decisions. They also approved Gardasil for use in boys which was another good sign.

Now, the final hurdle which remains is getting them to extend the age for which both women and men can obtain the vaccine which now tops out at 27. Many individuals married for decades may find themselves divorced and back on the dating scene. Why should they not be offered this same protection? While the decision has not been denied, it has been pushed back and is expected this summer. Let's hope they remain consistent with these prior two decisions and extend the age, which in my opinion should be open-ended and not just 45. Only time will tell.

Children and the HPV Vaccine

It has been decades since children heard the words, “Don’t go outside and play”, or “You cannot go outside and play with your friends. As a matter of fact, it has been so long, that parents of young children today have probably never heard those words, nor did their parents – perhaps their grandparents though.

Years ago, children were sequestered inside their homes, unable to go outside as they do today and interact with their friends. The reason – disease, but not just any disease, communicable deadly diseases such as polio, typhoid fever, measles, mumps and rubella. These diseases claimed thousands of lives each year.

It was not until mass immunization came into practice, requiring school-aged children to be vaccinated if they were to attend school that things changed. Today when parents visit their pediatricians, they are given a list of required immunizations required by law. If their child does not have these immunizations when it comes time for school, they simply will not be admitted.

Cancer is a disease which has killed hundreds of thousands of individuals during this interval and prior. However, until recently (about thirty years ago) several cancers, in particular cervical and also Hepatitis have been linked to viruses.

Since its connection to cervical cancer in 1984, and the advent of HPV testing, the number of cases of cervical cancer in the United States has decreased dramatically. However, in other less developed countries cervical cancer still remains the number one cancer killer in women. Also since 1984, HPV has been found to cause numerous other types of cancer including vulvar, vaginal, anal, and penile – all genital in nature. HPV is considered the number one communicable sexual disease with 80% of the population being infected with HPV at some time in their lives.

What is alarming is that more recently, HPV has been shown to affect other organs not considered sexual in nature such as the head/neck, mouth/tonsil and even lungs. Who knows how many other cancers are indeed causes by this one virus?

In many states the HPV vaccine was made mandatory for school admission. Many of those states are reconsidering their decisions with some rescinding earlier rulings. Is this a good thing? Not given research showing that the human papillomavirus can be transmitted through means other than sexual contact but via foamites.

Foamites are inanimate objects which can harbor the virus. A virus which is very difficult to destroy even at very high temperatures including those normally found in your washing machine. Many ill-informed parents are refusing to have their children immunized against HPV but it is just those parents who should be asking themselves how often their child may share a drinking cup or utensil with a classmate in the cafeteria.

Most parents would agree that they do not want to isolate their children from social interactions with friends which aid them in becoming well-rounded adults. Nor do they want to expose them to any form of cancer and even with the idea that celibacy can prevent exposure to HPV there is no test for men so a wife can still acquire the virus from her husband even if she has remained celibate.

It is time that parents view the human papillomavirus as the threat that it is and regulated or not, to have their child immunized against this proven cancer causing virus. Speak with your pediatrician or family doctor and research information of HPV at various reputable websites such as thehpvsupportnetwork.org.

We are all concerned for our children’s health, but I don’t think any parent wants to have to answer their child’s question, “Mommy, why can’t I go outside and play with my friends?”

HPV Vaccine

Recently, some state legislators have taken up action against the mandatory administration of the HPV vaccine in young girls. In light of the vaccine’s high success rate in preventing cervical cancer many states passed laws which added Gardasil to the already existing list of mandatory vaccinations required for children to enter school.

A number of things have changed since those laws were enacted. First off, the FDA approved the vaccine for use in boys and young men, a step forward in helping to prevent the ramifications of HPV in that age group. Secondly, there has been much more attention paid to foamites.

Foamites are inanimate objects which can harbor the virus particles and carry them from place to place. An example of this can be as simple as one’s finger but can include other simple objects as well.

People have been asking for some time if the virus can be contracted from such things as underwear or towels and the answer appears to be a resounding yes. The virus has been found on the underwear of women known to have HPV and towels are just another material source through which the virus may be transferred.

Unfortunately, this is a very virulent (strong/aggressive) virus and one that is very difficult to destroy even at very high temperatures. This brings us back again to the question of removing the vaccine from the mandatory vaccination list for school-age children.

One such legislator in Virginia has stated that HPV does not have the likelihood of being transmitted between these children as with other diseases for which we already provide mandatory vaccinations. Apparently she is not considering the significant research pointing to foamites transmission of HPV when considering putting forth this legislation.

HPV has already been found in saliva, amongst other bodily fluids such as urine, breast milk, seminal fluid and others. How often do school-aged children share that can of soda or other drink – a perfect example of foamites. So before considering rescinding this legislation these legislators, most often not medically oriented, need to become far more educated and up-to-date when it comes to HPV vaccination.

It has taken years for the FDA to approve the use of the vaccine in the prevention initially of cervical cancer. This was then expanded to include vaginal and vulvar dysplasia and cancers. They are on the verge of deciding, this month, whether or not to include anal dysplasias and anal cancer onto that list.

With all the progress that has been made in the five years since the vaccine became available, hopefully legislators will not rescind that progress as a result erroneous information and lack of thorough research.

HPV and Oral Cancer

For as long as the media has been mentioning HPV in its articles and news segments, it has been in relation to its sexually transmitted status and as causing dysplasia (cell changes) and cancer in the genital region. This included predominantly the cervix but was also mentioned to include the vagina, vulva and anus. Rarely did the media cover HPV in men and its connection to penile cancer and also anal cancer in men.

Well now, the media has another area on which to focus when it comes to HPV – the mouth. In recent studies at Johns Hopkins, studies have shown at 25 percent head and neck cancers are indeed caused by HPV. Of that 25 percent, 90 percent have been isolated and shown to be HPV strain 16.

Listed as one of the “high risk” strains of HPV, HPV16 causes 50 percent of all cervical cancer, at least half, with the remainder attributed to HPV18 at 20 percent and a combination of others making up the difference.

Many parents who have been against the HPV vaccine being included as part of the mandatory childhood vaccinations offer for their opposition the fact that HPV is not transmitted as many other virus are, such as air-borne. However, so much new information is coming to light about HPV that this may end up being more of an excuse than anything else.

Using the herpes virus as an example, we have been told many things over the years which have since be proven to be untrue. An example of this is the fact that the virus cannot be spread unless the individual is having an active outbreak.

When it comes to HPV, one of the most significant findings of late has been fomites. These are inanimate objects which can carry the virus and transmit it to another individual. Fomites can be totally non-sexually related. The human papillomavirus has been found in various body fluids, among them saliva. What grade-school student hasn’t shared a soda or other drink? What athlete hasn’t shared a water bottle at a sports event?

Until recently, HPV was believed only to be sexually related but now even kissing is in question when it comes to transmitting the disease. This recent discovery that HPV constitutes one-quarter of oral cancers (head/neck) certainly does shed new light on beliefs held less than a decade ago, and while oral HPV can be contracted via oral sex, it requires us to question just how extensive the virus is, and to accept the fact that it is no longer just genitally based.

FDA Should Expand HPV Vaccines' Age Limit

The next few months will be a very significant time, not only for women but for the Gardasil vaccine as well. This is because the FDA (Food and Drug Administration) is holding hearings into whether or not to extend the use of the vaccine. Currently, Gardasil is approved for administration between the ages of nine and twenty-six. When all is said and done, that high age range will be extended to forty-five.

Gardasil is administered in three doses with the cost hovering around $350 for the series. You can often find a physician who is willing to administer the vaccine “off label”, meaning outside of the standard protocol. As a result, the patient ends up having to carry the cost. So why would anyone really care?

Ultimately having girls immunized prior to the onset of sexual activity would be optimal but what about the teenagers and women in their early twenties, the ones who have the highest incidence of HPV infection? Their immunizations would require knowledge of the vaccine in addition to the ability to cover the expense (although Merck does provide financial assistance under certain criteria). Until age twenty-six, insurance would continue to pick up the cost of the vaccine.

So what then becomes of those women over age 26? The highest incidence of cervical cancer occurs in a woman’s thirties and forties. Presumably she has been exposed to the virus for some time, at this point, and if she continues to remain HPV positive (persistent infection), carries a much higher chance of developing cancer. By this point in time, if a woman is going to have HPV she would have shown symptoms by now, say some. Not necessarily. Symptoms of high risk HPV are often so minimal that they are missed or attributed to something else. Because many of the initial signs resolve rather quickly, the woman usually doesn’t give it a second thought.

It is important that the FDA decide to extend the use of Gardasil beyond age twenty-six to the proposed forty-five. A vast majority of women are married and have had children. They no longer need to be concerned that a pregnancy may set off an HPV infection. Having been in a monogamous relationship, their chances of having acquired the human papillomavirus are less than that of those having had multiple sexual partners during that time frame. However, what happens when this couple now divorces? When after fifteen or twenty years of marriage, the woman suddenly finds herself back on the dating scene? Is she not entitled to receive the same protection from this cancer causing virus as younger women? The answer to that question is a resounding yes, and hopefully before year’s end, the FDA will agree.

HPV and Anal Cancer

In the 1980s, we still had not been introduced to the Internet. Who would have thought everyone would spend countless hours playing solitaire for the sole purpose of watching the cards spring from the page. There was no electronic mail or GPS devices, no iPods, iPhones or iPads and no “Google.” There was however one very significant discovery. After decades of devoting his life to research, Professor Harald zur Hausen, MD (photo featured above) discovered that it was the human papillomavirus (HPV); more specifically HPV strains 16 and 18, which were responsible for 70 percent of cervical cancers.

Unlike bacteria, a virus is capable of remaining dormant in the body for months or even years and it does not respond to antibiotics. By the close of the 1980s, medical science was able to test for the virus along with the Pap smear and also to do more in depth studies to determine just which strain of the virus a person had. The request had been made by Professor zur Hausen to work on the development of a vaccine against this virus but was declined.

It was October 1991 when I was diagnosed with HPV-induced cancer even though my initial diagnosis was in 1987. From 1987 until 1991 the precancerous lesions caused by this virus had remained localized mainly to the vulva though there was the occasional vaginal and cervical lesion. Imagine my utter shock when I was informed, after what was to be a routine hemorrhoidectomy after the birth of my daughter, that I had invasive anal cancer.

As an RN I had very close ties to the medical community, I even managed a local radiology practice in Northern New Jersey making physicians in New York within easy reach. My boss became my radiation oncologist as I endured both radiation and chemotherapy. I was 33.

My treatment was complicated by the fact that there was no vast wealth of knowledge regarding HPV related cancers nor was the information which existed, easily accessible. Never-the-less, that treatment, along with surgery and regular post-treatment follow-ups, kept me cancer free – at least temporarily.

In 2008, seventeen years later, I was once again diagnosed with invasive anal cancer. I thought that now things would surely be different. We had the Internet, a means of disseminating all the research results culminated in the almost two decades prior. A means for the average individual, in the comfort of their own home, to “Google” for HPV and cancer.

Don’t get me wrong, it’s not that there wasn’t information to be found. It’s just that the information I found to often be incorrect, misleading and in some cases downright wrong! Women in particular still were not urged to obtain the vaccine against the two most proliferative strains of the virus which had since been developed, and doctors in general were remiss in their overall knowledge of HPV – frighteningly so.

It was for this reason that I decided to write Any Mother’s Daughter. I was not only upset, but angry over the fact that after two decades it was as difficult for women to find out about the virus and the dangers it posed as it had been initially for me in 1991 and this had to change.

I chose to incorporate my own story into the book, allowing the reader someone with whom to connect, while at the same time learning about the virus, how it causes cancer, the diagnosis, treatments and procedures accompanying the diagnosis of high risk HPV. It became my goal, to educate women and others (men and the healthcare professionals) regarding HPV, as well as, to become advocates for their own healthcare in the process.

Bonnie was recently featured in the Orlando Woman Newspaper:
Any Mother's Daughter~One Woman's Lifelong Struggle With HPV: Page 8: http://orlandowomannews.com/files/091010.pdf