About AIDS & Cancer

The letter and articles you will find on this page were written by volunteers of the Richard M. Brodsky Foundation. There are also several websites which should serve as excellent resources for people living with HIV / AIDS and cancer. Many of the sites are more specific to Nassau / Suffolk County but all the sites have some helpful information about living with these illnesses, educational aspects and medical choices, updated daily news reports, support groups, and / or advice on receiving financial assistance. It wasn’t the purpose of this web page to list every website which could help people living with HIV and cancer. However, from the links posted below, many of these sites are connected to other excellent links. The common theme of the volunteer-written articles relate to living with AIDS and cancer in Long Island, New York. Also included on this page is a letter written and faxed to United States Senators Charles E. Schumer; the same letter, different addressee, has been faxed to United States Senator Hillary Rodham Clinton and Mr. Christopher M. Hahn, President and CEO of United Way of Long Island, the organization which administers the funding from The Ryan White HIV/AIDS Treatment Modernization Act of 2006. The question arises: Were our leaders aware that their would be cuts in AIDS services in Nassau / Suffolk County for 2007, and what can be done to restore full funding for AIDS services in Nassau / Suffolk County.

On April 28th 2008, The U.S. Second Circuit Court of Appeals ruled in favor of Suffolk and Nassau Counties which will restore more than $1 million in Ryan White Funding to Long Island. Previous legislation by the U.S. Department Health and Human Services found Long Island ineligible for vital funding due to technicality. The year long litigation  to restore Long Island’s funding status has brought hope and increased strength for HIV/AIDS patients and those who stand for them. The suit against HHS was led by Nassau County Executive Thomas R. Suozzi, Congressman Steve Israel, Nassau and Suffolk Health Departments, County Attorney offices and the United Way of Long Island.

Letter to United States Senator Charles E. Schumer(click here to view pdf) 

AIDS Articles

Reality of HIV on Long Island:

While scientists avidly search for a cure for AIDS, we must educate ourselves of its wrath on our world.  Every day there are 7,397 newly reported HIV cases.  Every day 5,480 lives are lost due to AIDS.  Every day 1,013 children, under the age of 15, are diagnosed with HIV.  Often times when we hear stories of the epidemic in far off lands, we view it as merely a Grimm fairy tale. 

This disease has been racing across our very own nation for over two decades and is gaining speed.  The United Way states that every nine and a half minutes, another person becomes infected with HIV in America.  41% of all newly reported HIV cases in America are from ages 13-29.  Every single hour two people inside the 13-24 age group contracts HIV.  With increasing sexual activity and drug usage in this age range, they are at the greatest risk.

New York State is the number one state for people infected with HIV, while neighboring state, New Jersey, resides in the top five.  It may be raging in Manhattan, where according to the Long Island Association for AIDS Care, you are three times more likely to contract HIV than anywhere else, but it also is growing rapidly in America’s seemingly safe suburbia. 

As of 2006, in combined Nassau and Suffolk counties, there were 2,032 reported people living with HIV, and 3,644 reported people living with AIDS.   Long Island has more reported cases than any other American suburb.  According to United Way, Long Island has more reported cases than 26 separate states. 

These are only reported cases.  There are an estimated 21% of people who are HIV positive who remain unaware because they are asymptomatic.  That is an estimated 250,000 people in our country that do not realize that they are HIV positive.  Symptoms may not show anywhere from 16 months up to 15 years.  These carriers look fine, feel fine, and carry on about their normal lives without any idea that they are HIV positive.  From the first day you contract HIV, it can take three months for the antibodies to build up enough to be detected.

The sooner you find out that you are HIV positive, the sooner you can get information on getting medicated.  Everytime you go to the doctor, throw in an HIV test, regardless of your lifestyle.  If you have unprotected sex or are an intravenous drug user, you should be tested every three months, as you are at the greatest risk.  There are measures that you can take to lower your risks.  Roger Miller, from the Nassau County Health Department states, “We always encourage abstinence first of all.  If you’re going to be sexually active, we advise people to limit their number of partners, and to use condoms everytime.” 

There is no location, class, age, or race that is safe from this disease.  This disease is not biased.  You are most at risk if you are an intravenous drug user or sexually active in any way.  Yes, HIV defines oral sex as sexual activity.  It can attack whether you are African-American, Caucasian, Hispanic, Asian, gay, bisexual, straight, a president, a farmer, a secretary, 14, 37, or 62.

-Bobbi Craig, April 2009

AIDS: Local, National, and Global Perspectives

Acquired immunodeficiency syndrome, better known as AIDS, is a collection of infections and symptoms that result from damage the human immunodeficiency virus (HIV) does to the immune system. By breaking down the acronym, one can better understand the effect of the disease. Acquired means that it is not a hereditary disease, but one that develops later from a “disease causing agent” (HIV). ImmunoDeficiency means that AIDS weakens the immune system. Syndrome refers to the fact that the disease is characterized by a group of symptoms. For AIDS, this can mean “the development of certain infections and/or cancers, as well as a decrease in the number of certain cells in a person’s immune system.”¹

There is a difference between being HIV positive, and having AIDS. A definition from the University of Illinois states that “a person is said to be HIV positive if that person is infected with the virus HIV. The person may not be sick at all. A person is said to have AIDS if the person is infected with HIV and has certain signs and symptoms of the disease. In short, HIV is the virus, and AIDS is the disease that it causes.”²

While there are drug medications that slow the progression of HIV into AIDS, and some medication to mitigate the symptoms associated with AIDS, there is currently no cure for the disease. Further, these medications have not been comprehensively introduced in the countries hit hardest by AIDS (primarily due to a lack of financial resources in these countries).³ 

However, it is not just foreign countries that are suffering. The devastating effects of AIDS can be seen as locally as Long Island, New York, and as broadly as in the United States, Africa, and the world. Data from Long Island, NY has stated that “at least 5,000 people are living with AIDS on Long Island and, 15,000 are HIV-positive.” ⁴ In 1993, Long Island became the first suburb in the US to qualify for financing through the “Ryan White Comprehensive AIDS Resources Emergency Act, a Federal program that has funneled more than $2 million to Nassau and Suffolk Counties for transportation, clinics, food and dental programs for people with AIDS.” ⁵ At this time, the NY times claimed that Long Island had the highest suburban rate of the disease in the nation. The reported number of people living with AIDS in Long Island has decreased significantly (in part to better methods of data collection), as a United Way article estimates the number of people living with AIDS in Long Island at 3,200 for the year 2007. ⁸ 

In the United States, AIDS effects thousands of individuals, their families, and their friends ever year. According to the US Center for Disease Control and Prevention, in 2005, there were 40,608 reported diagnoses of AIDS in the US, and a cumulative total of diagnoses of AIDS in the US was 952,629 individuals. Unfortunately, this disease claimed the lives of 16,316 adults and adolescents, and 7 children under the age of 13 in 2005. The cumulative number of deaths caused by AIDS in the US was estimated at 525,442 adults and adolescents, and 4,865 children under age 13. ⁶

 The general public tends to associate AIDS with Africa. Unfortunately, the statistics for that continent are truly devastating. The Joint United Nations Program on HIV/AIDS released an epidemic update in 2007. They found that the Sub-Saharan section of Africa remains the region most affected in the world by AIDS. “Some 1.7 million people were newly infected with HIV in 2007, bringing to 22.5 million the total number of people living with the virus.” South Africa is hit especially hard, as a staggering 15% of the adult population in eight South African countries carried the HIV virus in the year 2005. The number of people affected seems almost too high to believe, yet there is some hope that the relief work done in Africa is having a positive effect. According to the UN release, “like most of the countries in Southern, East and West Africa adult HIV prevalence is either stable or has started to decline.”⁷

The UN release also provided a global perspective, claiming that the total number of cases of AIDS in the world is approximately 33.2 million people. ⁷ This number is a reduction of 6.3 million people from the previous report, largely due to “improved and expanded surveillance, data collection, and methodologies, which have allowed UNAIDS and WHO to present a more detailed and accurate picture of the global AIDS epidemic.” ⁷ As scientific interest in studying AIDS and epidemiology increases, there has been an increased focus on accuracy in these estimations about AIDS prevalence. While the report notes that the percentage of new cases of AIDS per year has largely remained stagnant, it also demands that we understand that this in no way means that the problem is under control. In 2007, 2.1 million people died as a result of AIDS. ⁷

Statistics alone do not tell the full story. They merely provide the context for us to understand how monstrous a problem AIDS really is. At local, national, and global levels, we can see how AIDS is a merciless disease.

-Philip Cawkwell

Bibliography

1 http://www.cdc.gov/hiv/resources/qa/qa2.htm

2 http://www.mste.uiuc.edu/murphy/HIV/HIVvsAIDS.html

3 http://aids.about.com/cs/aidsfactsheets/a/africa.htm

4 http://www.thebody.com/content/art/art31067.html

5 http://query.nytimes.com/gst/

6 http://www.liaac.org/listats.html

7 http://www.unaids.org/en/KnowledgeCentre/

8 http://www.unitedwayli.org/ 

HIV websites

http://www.unitedwayli.org/aids_grant_management.asp

Long Island Association for AIDS Care

http://www.nassaucountyny.gov/agencies/Health/

http://www.co.suffolk.ny.us/webtemp3.cfm?dept=6&id=1039

http://www.health.state.ny.us/diseases/aids/

http://www.thebody.com/

http://www.hivstopswithme.org/

Cancer Article

Understanding the General Components of Brain Cancer

By: Grace Giammona

March 8, 2008

Each year, approximately 140,000-190,000 people[2,4] are diagnosed with brain cancer in the United States. This does not include those who have been diagnosed with having a benign (noncancerous) tumor – a slowly growing tumor; the aforementioned statistic strictly measures the amount of malignant tumor cases there currently are in the United States, including both primary and metastatic (also referred to as secondary) tumors.

Primary tumors develop within the brain, – 40,000 cases of brain cancer diagnoses each year[2,11] – whereas metastatic tumors are traveling cancer cells originating from another part of the body[5,6,8,9,10,11,12].

Scientists have concluded that radiation to the brain, immune deficiencies, diet, exposure to vinyl chloride, and genetics[1,4,10] are all risk factors that may cause cancerous tumors in the brain. Such inherited diseases that are associated with brain cancer are:

“Multiple Endocrine Neoplasia Type 1 (pituitary adenoma),

Neurofibromatosis Type 2 (brain and spinal cord tumors),

Retinoblastoma (malignant retinal glioma),

Tuberous Sclerosis (primary brain tumors),

and Von Hippel-Lindau Disease (retinal tumor, CNS tumors)”[10].

Also, please note, the colorless gas, vinyl chloride is a major component in polyvinyl chloride (PVC), which makes plastic products such as “pipes, wire and cable coatings, and packaging materials”[3].

Dependent on where the tumor forms, there are a number of varying symptoms. When the frontal lobe portion of the brain is obstructed by a mass, one may experience “behavioral and emotional changes, impaired judgment, impaired sense of smell, memory loss, paralysis on one side of the body (hemiplegia), reduced mental capacity…[and] vision loss and inflammation of the optic nerve (papilledema)….” The parietal lobe effects speech, writing ability, recognition, spatial differentiation, and may cause seizures. The occipital lobe impairs vision and may also cause seizures. If the tumor grows in the temporal lobe, symptoms will not be evident, or asymptomatic. If the tumor should develop in the brainstem, similar to those symptoms of the frontal lobe obstruction will occur: “behavioral and emotional changes” may be experienced, along with “difficulty in speaking or swallowing, drowsiness, [morning] headaches…hearing loss, muscle weakness on one side of the face [or body]…uncoordinated gait, vision loss…[and] vomiting”[10].

Tumors are measured on a grade scale, measuring on a 1-4 gradient, with 1 growing slowly and 4 having an extremely aggressive growth rate. To be able to detect the tumor and measure the growth rate, scientists use CT (computed tomography) Scans or CAT Scans, where dye is either injected or digested and x-rays are taken to highlight the foreign body. Another common detector is the MRI (magnetic resonance imaging), where magnetic and radio waves create a 3-D image of the brain on a computer[4,5].

As the neurologist may see fit, basing the assessment on the grade of the tumor and the placement on the brain, the tumors are usually treated by one or more of the three suggested treatments: surgery, radiation therapy, and/or chemotherapy. Such treatments may cause severe side effects and it is important to ask the doctor what they may be.

The top five cancer-specialist hospitals are:

 University of Texas M.D. Anderson Cancer Center, Houston;

Memorial Sloan-Kettering Cancer Center, New York;

Johns Hopkins Hospital, Baltimore;

Mayo Clinic, Rochester, MN;

and Dana-Farber Cancer Institute, Boston[7].

There are organizations that focus mainly on raising funds to assist in funding research on brain tumors and to assist people in providing support and information:

American Brain Tumor Association (ABTA);

Brain Tumor Society;

American Cancer Society;

National Cancer Institute (NCI);

National Brain Tumor Foundation (NBTF);

and Musella Foundation for Brain Tumor Research and Information[9].

Bibliography:

1 Eyre HJ, Lange DP, Morris LB. 2002. Informed Decisions. 2^nd ed. Atlanta (GA): American Cancer Society. p. 576-581. 2 http://www.abta.org/siteFiles/SitePages/ 3 http://www.atsdr.cdc.gov/tfacts20.html#bookmark02 4 http://www.braintumor.org/upload/contents/330/GuideFINAL2007.pdf 5 http://www.cancer.gov/cancertopics/types/brain/ 6 http://www.cancerbackup.org.uk/Cancertype/Brainsecondary/ 7 http://health.usnews.com/usnews/health/best-hospitals/ 8 http://www.medicinenet.com/brain_cancer/page4.htm 9 http://www.ninds.nih.gov/disorders/brainandspinaltumors/ 10 http://www.oncologychannel.com/braincancer/index.shtml 11 http://www.tbts.org/itemDetail.asp 

12 http://www.wrongdiagnosis.com/b/brain_cancer/subtypes.htm

Cancer websites

http://www.cancercare.org/

get_help/facetoface.php

http://www.health.state.ny.us/nysdoh/cancer/center/

http://www.virtualtrials.com/support.cfm

http://virtualtrials.com/

http://www.cbtf.org/cms/support_groups

http://www.braintumorfoundation.org/

btsm_supportgroups.php

http://www.siskofoundation.org/sf/links.html

http://www.breastcancerwellness.org

http://abcny.org/Publications/pdf/engl_for_website.pdf

http://www.cancersociety.com/forum/index.cfm

http://asinglelight.org/Mambo/component/option,com_search/

http://www.cancer.org/docroot/home/index.asp

http://www.cancerandcareers.org/

Dr. William Tan

http://www.schneiderchildrenshospital.org/sch_child_library.html

http://charnaradbellfoundation.org/charnasstory.html

http://www.nutcrackerpublishing.com/about.html