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Exclusive Patents on the BRCA Genes: Adding Burden to an Already Overburdened Cancer Community March 2, 2012

Posted by patoconnor in cancer, gynecological cancer, ovarian cancer, tubal cancer, Uncategorized, uterine cancer, vaginal cancer.
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Exclusive Patents on the BRCA Genes: Adding Burden to an Already Overburdened Cancer Community

 March 1, 2012

By Sue Friedman, Executive Director, Facing Our Risk of Cancer Empowered (FORCE)

As part of the ACLU’s Taking Back Our Genes campaign , guest blogger Sue Friedman, the Executive Director of FORCE, describes the adverse impact the exclusive patents on BRCA1 and BRCA2 have on the cancer community.

It is our position that the awarding of exclusive patents for the BRCA1 and BRCA2 genes to Myriad Genetics has adversely affected access to care and research specific to hereditary breast and ovarian cancer, adding additional burden to our already overburdened hereditary cancer community. For that reason, we support the litigation challenging the BRCA gene patents and filed an amicus brief with the U.S. Supreme Court with other patient advocacy groups.

In our 13 years of advocating for and serving the hereditary cancer community, we have seen firsthand the adverse effects of exclusive gene patenting.

Exclusive licensing of BRCA testing stifles research, including:
Research on PARP inhibitors, targeted therapy for BRCA-associated cancer: We believe that the BRCA gene patent has had a profound impact by delaying and slowing the development of targeted cancer therapies for people with BRCA mutations. PARP inhibitors are a class of drugs that were developed based on scientists’ knowledge of how hereditary cancers develop in people with BRCA mutations. The drugs showed activity and early studies were promising in several types of hereditary cancers including breast, ovarian, and prostate. PARP inhibitor research has been ongoing since 2005, and today, seven years later, the drugs have yet to gain FDA approval. After meeting with the FDA, we were told that for targeted therapies that benefit a distinct population (such as people with a BRCA mutation) to receive FDA approval, they require that any companion laboratory test identifying a target population must be FDA approved as well. BRACAnalysis — Myriad’s test for BRCA mutations is not FDA-approved. Myriad is a CLIA-approved laboratory; they were never required to receive FDA approval in order to market their test, and it doesn’t appear that they have plans to seek FDA approval. Because Myriad holds the patent on the gene, no other lab can develop an FDA-approved test to identify BRCA mutation carriers.

Research that helps determine which BRCA genetic changes are deleterious and which are not: BIC (Breast Information Core) is a large international consortium organized by the National Human Genome Research Institute (NHGRI), which is part of the National Institutes of Health. BIC’s goal is to provide critical research to determine gene changes that may be cancer-causing versus those which aren’t. Around 2004, Myriad stopped contributing data to the BIC database. About 7 percent of BRCA tests return with an inconclusive result and data from BIC is used to help better classify these variants to determine if they are cancer-causing. According to a 2010 article in the Genomics Law Report, Myriad quietly stopped contributing data to BIC in favor of building its own database to retain a competitive advantage over other gene testing companies once their patent runs out.

Exclusive licensing negatively impacts BRCA test interpretation: Myriad’s decision to no longer contribute to the BIC database has impeded the interpretation of a type of inconclusive test result known as a Variant of Uncertain Significance (VUS). Once the patent does expire, the fact that Myriad no longer contributes mutation information to the BIC consortium will limit other laboratories’ ability to interpret certain test results. A 2011 article from the New York Times suggested that withholding this data may provide a competitive benefit to Myriad over other laboratories after their patent expires. But it comes at the cost of critical information that could help provide information to families that have inconclusive genetic test results right now.

The excessive cost of testing limits access and negatively affects clinical care: There is now evidence-based information demonstrating that identifying those who have the highest risk for breast and ovarian cancer can lower breast, ovarian, and all-cause mortality through genetic testing and surgical prevention. The cost of prevention, both in dollars and human lives, is less than the cost of treating cancer once it is diagnosed. Yet, people are being denied access to critical health information due to the excessive cost of BRCA testing. Financial assistance for BRCA testing is limited, especially for people who have any type of health insurance. With patent exclusivity and a monopoly on the test, Myriad has increased the cost of their test even as the cost of genetic technology and gene sequencing has gone down. The full-sequencing BRCA testing costs about $3,500, making it cost-prohibitive for many people. Further, Myriad charges an additional $750 for expanded testing known as BART to look for mutations known as large rearrangements in some people who test negative with full BRCA sequencing.

You can learn more about FORCE’s advocacy here.

And if you agree that human genes should not be patented, please join us in Taking Back Our Genes.

ACLU

 

Ovarian Cancer Resources Education, Genetics Information, Financial and Legal Support February 18, 2012

Posted by patoconnor in cancer, gynecological cancer, ovarian cancer, tubal cancer, Uncategorized, uterine cancer, vaginal cancer.
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Cancer Resources Education, Genetics Information, Financial and Legal Support:

A Single Light
http://asinglelight.org/
Searchable database of cancer-related Web sites.

American Cancer Society
http://www.cancer.org/docroot/home/index.asp
Information on cancer, research, advocacy, and community programs and services.

American Pain Foundation
http://www.painfoundation.org/learn/programs/spotlight-on-cancer-pain/breakthrough-pain/
Online toolkit for assessing pain as a part of a treatment plan.

Association of Cancer Online Resources
http://www.acor.org/
Collection of online communities that provide information for cancer survivors.

Cancer.com
http://www.cancer.com/cancer/
Comprehensive listing of credible Web sites for those affected by cancer.

Cancer.net
http://www.cancer.net/portal/site/patient
Cancer information from the American Society of Clinical Oncology.  Offers podcasts, feature articles, and links to current news.

CancerEducation.com
http://www.cancereducation.com/
Educational programming and information for health care professionals, cancer patients, and their family members.

CancerPage.com
http://www.cancerpage.com/cancers/default.asp?channel=Ovarian_Cancer
Offers the latest news, research, and information on prevention, detection, and treatment of ovarian cancer, as well as interactive decision support tools.

Centers for Disease Control and Prevention
http://www.cdc.gov/cancer/knowledge/
CDC, in collaboration with the Department of Health and Human Services’ Office on Women’s Health, established the Inside Knowledge: Get the Facts About Gynecologic Cancer campaign to raise awareness of the five main types of gynecologic cancer: cervical, ovarian, uterine, vaginal, and vulvar.

Foundation for Women’s Cancer
www.foundationforwomenscancer.org
Brochures and other educational material for women who have or who are at risk of developing a gynecologic cancer. For a complete list of Foundation survivor courses click here.

Gilda Radner Familial Ovarian Cancer Registry
http://ovariancancer.com/app/index.php
An international registry of families with two or more relatives with ovarian cancer.  Offers a helpline, education, cancer information and peer support for women with a high risk of ovarian cancer.

Health Finder
http://www.healthfinder.gov/
Government and nonprofit health and human services information.  Links to carefully selected information and Web sites from over 1,500 health-related organizations.

Johns Hopkins Pathology’s Ovarian Cancer Web
http://ovariancancer.jhmi.edu/
Provides information, personal stories, and an online community.  Gives specific information about each individual ovarian tumor type.

Living with Cancer
http://www.cancer.net/patient/Library/Cancer.Net+Features/Living+With+Cancer
Information about how to manage common problems faced by those living with cancer.

Multinational Association of Supportive Cancer Care
www.masscc.org

National Cancer Institute
http://www.cancer.gov/
Information about cancer topics, genetics, clinical trials, research, and statistics.  Helpful links as well as online assistance with Nation Cancer Institute’s information and cancer-related resources.

National Coalition for Cancer Survivorship
http://www.canceradvocacy.org/resources/
Offers audio Cancer Survival Toolbox and information about finding resources online.

National LGBT Cancer Network
http://www.cancer-network.org/
Information for survivors and health care providers about increased cancer risks, decreased screening rates, and unique survivability issues of lesbian, gay, bisexual and trans gender cancer survivors and those at risk.

National Ovarian Cancer Coalition (NOCC)
http://www.ovarian.org/
Offers information about ovarian cancer as well as a helpline (1-888-682-7426) for support.

Oncolink
http://www.oncolink.upenn.edu/
Cancer-related information for cancer patients, families, health care professionals, and the general public.

Ovarian Cancer Canada
http://www.ovariancanada.org/
Provides support, education, and research as well as a toll free support line.

The University of Texas MD Anderson Cancer Center: The Anderson Network
http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/ovarian-cancer/index.html
Online information and downloadable PDFs about prevention, diagnosis, treatment, and support.

Women’s Cancer Network – Ovarian Cancer
http://www.wcn.org/
An interactive Web site about gynecologic cancer, helping women to understand more about the disease, learn about treatment options, and gain access to new or experimental therapies.

Genetics Support

Financial and Legal Support

Cancer Care
http://www.cancercare.org/get_help/
Professional support services to people with cancer, caregivers, children, loved ones, and the bereaved.  Offers help finding counseling and financial support.

Cancer.com
http://www.cancer.com/cancer/fs_financial-legal.html
Links to financial and legal resources and government agencies.

Clinical Trials and Insurance Coverage: A Resource Guide
http://www.cancer.gov/clinicaltrials/learning/insurance-coverage
Information on insurance coverage for clinical trials from the National Cancer Institute.

Corporate Angel Network
http://www.corpangelnetwork.org/
Help arranging free air transportation for cancer patients traveling to treatment using empty seats on corporate jets.

Bridge of Blessings
http://bridgeofblessings.org/index.html
Information and application for women with cancer in need of financial assistance.

Family and Medical Leave Act Advisor
http://www.dol.gov/elaws/esa/fmla/fmlamenu.asp
Provides information on the Family and Medical Leave Act.  Lists questions to help determine the rights of employees and employers.

Federal Trade Commissioner
http://www.ftc.gov/opa/1995/12/via.shtm
Information about a Federal Trade Commissioner brochure issued to advise the terminally ill who are considering selling their life insurance policies in order to pay bills.

Look Good…Feel Better
http://www.lookgoodfeelbetter.org/
Help from a free, non-medical, brand-neutral, national public service program supported by corporate donors to offset appearance-related changes from cancer treatment.

Medicaid
http://www.cms.hhs.gov/home/medicaid.asp
Official government information about Medicaid and Medicare.

Medicare
http://www.medicare.gov/
Official government information for people with Medicare.

Mercy Medical Airlift
http://www.mercymedical.org/
Information about this nonprofit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation.

Oncolink—An Introduction to Viatical Settlements
http://www.oncolink.com/resources/subsection.cfm?c=6&s=27&ss=72
Offers information and resources for the seriously ill who are considering selling their life insurance policy to a viatical settlement company.

Patient Advocate Foundation
http://www.patientadvocate.org/
An active liaison between patient and insurer, employer and/or creditor.  Information about resolving a patient’s insurance, job retention and/or debt crisis matters through case managers, doctors and attorneys.

Rise Above It
http://www.raibenefit.org/
Provides grants and scholarships to young adult survivors and care providers who face financial, emotional, and spiritual challenges.

Team Continuum
http://www.teamcontiuum.net/
Assists with basic needs that ease the financial stress patients and their families face by paying bills (electric, phone, water, gas, etc.), rent, tutoring, small toys, transportation and other incidental needs that arise.

The National Collegiate Cancer Foundation
http://www.collegiatecancer.org/
Provides services and support for young adults diagnosed with cancer.  Offers need-based financial support for young adult survivors pursuing higher education.

courtesy: Ovarian Cancer.org

When Silent Cancer Speaks Loudly November 14, 2008

Posted by patoconnor in cancer, gynecological cancer, ovarian cancer.
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ovariancancerribbon1

When Silent Cancer Speaks Loudly

Part 1: How Ovarian Cancer Beat My Mother

By Suja S. Amir

Freelance Wirter – United States

The word cancer strikes a chilling chord with most people. It sends out the message of fear and death. It creates mental images of the physical side effects of chemotherapy and the flashing symbol of “radiation”.

Cancer, although extremely prevalent in Western society, is unfortunately a condition that educates most only after direct experience through friends, family or other loved ones. My education about cancer was no different. My mother was diagnosed with ovarian cancer on the 29th of August 2008. From that point on, everything was different.

Prior to the 29th, my mind was on other things. Ramadan was on its way and I was excited. I have a habit of “practicing” fasts to prepare my mind and body for Ramadan and this year, it was more important for me since the days were longer. I started my practice fast mid-August and shortly after my first few, I got a call from my mother saying she was admitted to the hospital for abdominal pain. She was admitted by her gastroenterologist, a physician who is specialized in treating disorders related to the digestive system.

The normal worries ran through my mind about the possibilities of my mother’s condition. At 68, she was in pretty good health. My mother’s occupation as a registered nurse meant she was extremely vigilant about her health and check ups. Recently, my mom was even more conscientious about her health as my father had passed at age 70 (of natural causes) in February 2007. She had high blood pressure and had her thyroid removed six months prior, but nothing that stood out.

There wasn’t a family history of any other condition that crossed my mind. She had mentioned some earlier symptoms to me, but they were vague. Abdominal distention, early satiety (feeling full early), and bloating all seemed to point towards a gastrointestinal problem. She had gotten every test known prior to her admission and everything was normal before August.

A Harsh Reality

When the final diagnosis came on the 29th of August, it felt like I was hearing something about someone else, someone else’s family. This couldn’t possibly be happening to my mother. It was a harsh reality to face. Listening to the doctor explain the diagnosis, the treatment plans and the outlook felt extremely unreal. She was diagnosed with ovarian cancer, stage IIIc (the cancer metastases are larger than 2 centimeters). For all intents and purposes, that didn’t make much sense to me. Although the doctor took his time and explained everything very eloquently, I was still a bit “shell shocked”.

After I put down the phone, I did what most of us do. I went to the “Google Dr.” and searched for some answers. I had a ton of questions. Questions like, why wasn’t this caught earlier? What tests could she have gotten to find out about this earlier? Weren’t there some signs to tell her that this was going on? Why did they only find out so late in the stage of ovarian cancer? What is chemotherapy? Will chemotherapy cure her? Is there a genetic component?

The list of questions just went on and on through my mind. As I did my internet research, I kept seeing a phrase that just sent chills every time I saw it. Ovarian cancer is sometimes called the “silent cancer”. I thought, silent? Silent??? That’s the LAST thing you want to hear about any medical diagnosis. And given the severity of any cancer, silent is not what comes to mind. You want to know that there are identifiable symptoms and tests. You want to know that there are tests that can accurately diagnose in order to optimize the treatment plans. But everything I was reading or hearing from the doctors as the days went on did not give me much more to go on. I was left with the idea that my mom was in agonizing pain from a “silent” cancer, a cancer that essentially crept up on her over a matter of weeks.

Chemotherapy was ordered because the doctors felt the tumor was too large for operation and felt chemotherapy would help shrink the tumor. My mother’s abdomen was extremely distended and looked as if she was about seven months pregnant. Oddly, her abdomen had looked normal only a few weeks prior. My brother and I sat with her, watching how she was grappling with the idea of cancer. My mother was now dealing with a situation she could not understand herself. My mother’s thirty years as a registered nurse, who took care of patients with worse conditions, did not know how to be on the other side.

Blessing

As Ramadan started, my anxiety went up about how I was going to manage being able to help my mom and fast. The only thing that kept me going was the thought that Allah doesn’t place a burden on a person greater than he/she can bear. I knew that fasting would drain me, but looking back, I doubt that I would have been able to focus if I was not fasting. Fasting sharpened my goals and sharpened my mind towards Allah. Fasting allowed me to ignore the worldly distractions that kept arising daily.

One night, as I sat next to my mother holding her hand a few days after her chemotherapy, I was gazing at the TV above her bed and just sat there, dumbfounded at the TV program. It was a telethon for cancer. “Stand Up To Cancer.” What? Ironically, the month of September is Cancer Awareness month. I was sitting there, by her bedside, just watching these people talk about all types of cancers, the need for awareness, the need for research and it just felt unreal.

It was only a few days after the chemotherapy treatments that my mother’s condition worsened. The outlook was grim. She was not improving and the pain of this tumor pressing on her internal organs was making it more difficult to breath. My brother, a cardiologist, who had taken time off to help with my mom had started looking more and more worried. I saw his frustration and helplessness. It must have been torturous for him to be a trained medical professional, but not have any idea or ability to help rid my mom of the pain she was experiencing. We sat next to her as the days passed, with nothing more than hugs, kisses and prayers to offer. No amount of medicine, visits from nurses or doctors were helping her condition.

Her oncologist came in one day to meet with us and said, “I was really hoping that the chemotherapy would have shrunk this tumor by now. But this is the most aggressive case of ovarian cancer I have ever seen. It is probably best to just make her comfortable now.” With that, my brother’s face just went pale. None of us wanted to give up on her ability to fight this disease, least of all my brother. He had been trying so hard to be there for my mom the way he felt my father would have wanted him to be. I know he took this as some sort of failure on his part, but it really was God’s will.

We moved her to hospice care and she was moved to our house. My kids decided they needed to be close to her and used her room as a play room. She died on September 14th, 2008. I was blessed with three weeks with my mother from the time of diagnosis to the time she left this world. I was blessed because I was given time to spend with her before she left us. I had time to talk to her, express my feelings to her and tell her exactly how much she meant to me. After all that has happened, I am left with the cloud of cancer, which is now “in the family”.

Education about ovarian cancer is important and any woman should educate herself as much as she can about it. Next week I will tell you what I’ve learnt in the second part of this series.

Suja S. Amir has a B.S. in Psychology from Virginia Commonwealth University. She has ten years of experience in nonprofit management in the US. She can be reached by sending an e-mail to sciencetech@iolteam.com.