Carolyn J. Jacobson, founding member, Coalition of Labor Union Women
National Women’s Health Week provides an opportunity to talk about something that’s not on most people’s radar screens, that is, the consequences of blame and shame connected to certain conditions/illnesses – specifically HIV/AIDS, Sexually Transmitted Infections (STIs), Diabetes/Obesity and Lung Cancer. The National Council of Women’s Organizations, to which the Coalition of Labor Union Women (CLUW) is affiliated, hosted a panel discussion on this topic in Washington, DC on May 15. CLUW has been on the forefront in educating women in the labor community about health care issues and how to lead a healthier, longer life.
People who suffer from these conditions/diseases have something in common besides living with a chronic disease or condition and its physical consequences. They also face the consequences of blame and shame, which often causes victims to suffer from depression and denial of the disease or condition, which can lead to a late diagnosis – which frequently results in a poorer prognosis. And women tend to be most vulnerable to the consequences of blame and shame associated with these conditions and diseases.
Education around these diseases/conditions, along with raising awareness of the real reasons these diseases/conditions occur can help diminish blame and shame and the consequences of blame and shame. Another vehicle for improving the situation is implementation of various provisions of the Affordable Care Act.
In the U.S.:
- Women make up 30 percent of domestic cases of HIV.
- African American and Latina women are 80 percent of American women with HIV.
- HIV positive women consistently have poorer clinical outcomes and higher mortality rates.
“These disparities are related to the social injustices and discrimination that women face,” Serra Sippel, president of the Center for Health and Gender Equity (CHANGE) notes. “In order to end these disparities we need to end the social injustices and stigma that women, especially HIV positive women, face.”
She explains that although there are medical interventions to keep HIV positive women healthy, “we are behind in the social aspects, as stigma keeps women from accessing care or using condoms. The fear of admitting positive status not only keeps women from using condoms but also from getting tested in the first place…”
Sexually Transmitted Infections
Another group of diseases that have blame and shame associated with them are sexually transmitted infections (STIs). Deborah Arrindell, vice president and director of Policy at the American Social Health Association observes, “In all things sexual, women most often bear the blame.”
STIs are more easily transmitted to women than from women. Arrindell points out that there are STIs for which there is no test for men or for which they are not tested. Additionally, several STIs have very few or no symptoms in men, but do for women (pelvic inflammatory disease, infertility, cervical cancer, etc.). A consequence, is that STIs have a disproportionate effect on women and women are more likely to be blamed for the transmission of STIs.
A lot of the guilt associated with diabetes is because people don’t understand how people get it, said Diana Karczmarczyk, director of High Risk Programs and Health Disparities (AANHPI and Women’s Initiative) at the American Diabetes Association. She explains that diabetes is a cluster of diseases, that is, many things going wrong in the body. She notes that “There is not one ‘cause.’ Nothing, genetics, age, obesity, is a 100% cause of diabetes.”
The numbers in the U.S. are staggering and growing:
- Twenty six million Americans have diabetes.
- It’s about 50/50 men and women.
- Approximately 85% of people with Type 2 diabetes are overweight or obese. Obesity, however, is not the only cause of Type 2.
“Education is vital for diabetics,” she says, stressing that “Many diabetics do not understand the disease.” “It is most important to realize that each diabetic’s treatment is different and individualized.”
She emphasizes that “Everyone, not just diabetics, needs to learn how to read food labels (and understand what they mean) and have access to healthy foods.”
Additionally, women are often blamed for diabetes since they are the primary care givers and cooks in the household. Not only does society blame them, but so do husbands and family members.
One problem is that “not enough people get tested or screened” for the disease. She points out that one in twelve people have diabetes and one in four doesn’t know they have it. And one in three is at risk. She adds, “Overweight needs to be a term not about stigma, but instead used as a clinical designation that indicates that person is at risk.”
Women tend to be at high risk for depression and not very well known is that diabetic women are at higher risk for depression. Also not well known is that there are resources for help, especially for patients who are suicidal. Many diabetics are sad about being a burden to their family, which, she says, can lead to clinical depression.
More people die from lung cancer than any other type of cancer – that goes for men and women. The numbers for women are 160,000 a year – more than breast and gynecological cancers combined.
Most of the lung cancer prevention efforts in the U.S. focus on smoking prevention, as cigarette smoking is the number one risk factor for lung cancer, points out Tina Hone, Outreach director at the Lung Cancer Alliance. In the United States, cigarette smoking causes about 90% of lung cancers, which includes many people who have heeded the warnings and stopped smoking many years ago. People who quit smoking have a lower risk of lung cancer than if they had continued to smoke, but their risk is higher than the risk for people who never smoked.
Lung cancer treatment funding is inversely proportionate to the number of people who suffer from it. The reason for this, she observes, is largely due to the stigma of lung cancer that is built into the public health infrastructure. She believes that the public health community declared victory over lung cancer when it began focusing on smoking cessation. She also notes a “you did this to yourself” mentality that is pervasive in the U.S.
A direct consequence is that the bill her organization drafted, the Lung Cancer Mortality Reduction Act of 2011, which would require the Secretary of HHS to implement a comprehensive program to achieve a 50% reduction in the mortality rate of lung cancer by 2020 and would require the program to include initiatives throughout HHS, has very few co-sponsors.
Hone observes that people who have lung cancer don’t want others to know they have it, fearing that if they do, they will be blamed for getting it.
The survival rate for lung cancer is 15% — largely due to late diagnosis. She notes that this rate is the same as it was 40 years ago when President Nixon declared war on cancer.
Although smoking is the primary cause of the increase in lung cancer in women, lung cancer is diagnosed in women who have never smoked. Of those with lung cancer who never smoked, a slight majority are women.
She does have some good news: Two years ago, the national lung cancer screening trial ended. The trial performed a low dose CT screening of high risk patients with the hope of reducing the mortality rate by at least 20%. The study ended early because the goal was reached early. The protocol has been sent to the US Preventative Services Task Force (USPSTF).
How the ACA Will Make a Difference
Brook Kelly, in her blog post, Why the Affordable Care Act is Critical For Women Living With HIV , she accurately calls The Affordable Care Act “a first and necessary step toward reforming our health care system to better meet the needs of all people.”
The Affordable Care Act includes a number of provisions specifically geared to making it easier for women to avoid getting HIV/AIDS, Sexually Transmitted Infections (STIs), Diabetes/Obesity and Lung Cancer. And if they contract any of these, it also includes provisions to help get an early diagnosis, before the consequences can be more serious.
An especially important provision of the ACA guarantees women access to preventative services annually– with no co-pay. Annual well-woman preventive visits include cervical cancer screenings. (Cervical cancer is caused by an STI, the human papillomavirus). ACA also includes enhancements to coverage related to HIV, other STIs, cervical cancer and pregnancy care.
Additionally, other provisions of the ACA:
- increase access to health insurance by expanding the Medicaid program to all people who live below 133 percent of the federal poverty level (FPL) period – disability status will no longer be required;
- prohibit health insurance discrimination against women and against people with pre-existing conditions, including HIV;
- provide greater health care security;
- create a health care system that better meets women’s unique needs;
- create new restrictions on annual limits, with minimum limits increased annually until they are completely prohibited by 2014;
- eliminate pre-existing coverage exclusion preventing coverage;
- accept more low income people into Medicaid program;
- provide tax credits and subsidies to people with moderate incomes (up to 400 percent of the poverty level);
- prevent insurers from dropping someone when he or she develops one of these conditions/diseases;
- end annual and lifetime limits on benefits;
- disallow insurers to charge higher rates simply because someone had diabetes;
- general emphasis on prevention and wellness.