Thursday, September 23, 2010

A Need For Change

I have wanted to blog on this issue for some time. I suppose it was a culmination of several things which have made this an appropriate time to do so.

I make clear on my website "The HPV Support Network" (previously Any Mother's Daughter) that HPV is not solely about cervical cancer. When Merck began marketing Gardasil, the vaccine to protect against certain strains of HPV, back in 2006 they were faced with a difficult challenge.

While it is well known that HPV is a sexually transmitted infection, marketing Gardasil as such was not going to get the attention it needed. It was the purpose of the vaccine that needed to be focused on and how better to do so than as a means to protect against cervical cancer.

While the initial indication for use was indeed against cervical precancerous lesions and potentially cancer, the vaccine also protects against two strains of the virus which cause gential warts. Perhaps many have noticed that the commercials talk about cervical cancers and "other" conditions caused by HPV. They never use the term genital warts because once again it focuses on the STI aspect. While understandable from their marketing point of view, it certainly does more damage regarding the self esteme of those who have it.

I am not going to get into a post about those who view the vaccine as permission (for young girls) to engage in sexual activity or intercourse. These individuals aren't capable of addressing the fact that a woman can remain celibate until marriage and still contract HPV from her husband because most men show no symptoms and when eight out of ten individuals already have HPV, chances are he does too. And, that contracting HPV doesn't require intercourse and even a virgin can have HPV because of its skin-to-skin mode of transmission.

What I want to focus on is that there are other things which have taken the back seat, if you will, to cervical cancer. If you were to look at the documentation which came with the vaccine initially, you will see that the indications for use include protection from gential warts and CIN (cervical intraepithelial neoplasia). What most people don't know, is that since then that documentation has changed. The indications for use have broadened to include protection against VIN (vulvar intraepithelial neoplasia) and VaIN (vaginal intraepithelial neoplasia) as well.

Why were these now included? Because research substantiated the fact that HPV effects more than just the cervix and, perhaps more importantly, that these lesions can also develop into cancer. Unfortunately there still remains one area excluded from these indications and that is anal.

Most people aware of the connection between HPV and cervical cancer also know that HPV is responsible for 99% of cervical cancers. Not only are people unaware that HPV involves the anus and perianal area but they are frighteningly less aware that it too (like cervical cancer) is responsible for 99% of anal cancers.

It's time that anal cancer gets the attention that it deserves. Unfortunately this is still an area of the body that people have difficulty talking about, and while I can understand this, overcoming those inhibitions will be necessary to save others from this lesser known form of cancer.

Like other cancers, anal cancer knows no limitations. It effects both men and women although women are effected more often than men. You would think that this statistic would make people realize that it is not limited to the gay male population. It is not inhibited by a person's social status - last June, Farrah Fawcett lost her long battle against anal cancer. I had hoped that it would finally begin to get the coverage it deserved. These hopes were quickly dashed when the death of Michael Jackson overshadowed virtually all coverage relating to Farrah.

What follows may be perceived as graphic and you may decide to stop reading now. I would hope not, because it is the initiative of individuals to push past what is comfortable for them that allows for growth.

Anal cancer is quite a horrific cancer. One might argue that all cancers are horrific but the fact is that some bring with them consequences that other cancers do not. For example, because the use of the anus is required on a regular basis it is not an area kept easily clean which inhibits healing. Radiation therapy for anal cancer causes severe burns to the outside skin and going to the bathroom is a nightmare. Not only is it painful having a bowel movement but urine only causes a burning feeling on the already radiation burned tissue.

It's not as though you can put a clean sterile dressing over the area and that is that. Healing after treatment is often compromised by the development of fissures, splits that occur in the skin around and often directly through the anal sphincter. If that description didn't make you cringe, then I can confirm they are extremely painful especially when pressure while going to the bathroom makes you feel like you're being ripped in two. The pain can become so bad that your body goes into an involuntary case of the shakes.

There is another whole aspect of anal cancer that needs to be addressed. When anal cancer has progressed to a certain point, it requires a colostomy - removal of the anus, suturing shut the opening and connecting the remaining end of the intestines through a stoma (opening) in the abdominal wall. A bag is attached to this stoma and the person loses their normal bodily functions having to forever defecate into this bag.

Not only are there severe physical ramifications as mentioned above but there are also tremendous emotinoal ramifications as well. Having to adjust emotionally to the permanent change in body image, worrying about leakage, smells, and a myriad of other issues. I'm not attempting to "gross" anyone out with these descriptions but rather to educate people regarding just what anal cancer patients may and often do endure as an end result. If this patient was concerned about being able to get into a relationship before, imagine how much more difficult this would potentially be after a colostomy.

I suppose one could argue that they still have their life. This is obviously true but at what cost. Does anyone think these issues can be resolved in a week, or month or even a year? As with any cancer, so much of this will have to do with the support system that the individual has at their disposal.

Anal cancer, like cervical cancer, has a high rate of cure when discovered early. However the medical community is poorly educated when it comes to providing screening by way of an anal pap. They often dismiss patient's concerns stating it is too "rare" to worry about. Yet the rate of anal cancer has continued to rise each year for some time now. Individuals with cancer, regardless of the area, deserve the options and resources that all other cancer patients do but these are sorely lacking for those with anal cancer.

The medical community needs to do more, much more, to educate physicians regarding the dangers of HPV and anal cancer. Doctors must take seriously patient's concerns for anal cancer especially if they have already had cervical issues from HPV. Studies show a 37% increased risk of HPV induced anal issues and cancer if you have had cervical involvement. The media must also work to make the public aware that like many other cancers, this can be cured and screening does exist. The only drawback is - will the widespread use of such screening come in time, and that remains to be seen.