Living in pain is horrific. Statistically, women are four times more likely to suffer from chronic pain than men. Making an awful situation worse – many of these conditions are neglected or poorly understood, causing many women to suffer intractable pain for years before they find relief. With insurance often denying coverage for these conditions, years of pain can also be financially devastating.
The Affordable Care Act bars discrimination by insurers.
In July, the Department of Health and Human Services implemented the final rule enforcing Section 1557 of the Affordable Care Act (ACA).
Section 1557 bars discrimination on the basis of “race, color, national origin, sex, age, or disability in certain health programs or activities.” In general, it applies to healthcare facilities and health plans who receive any federal funds or participate in the insurance marketplace.
The key provision in the law, explained by an HHS white paper, provides that insurers cannot “engage in discriminatory marketing practices or adopt or implement discriminatory benefit designs in health-related insurance or other health-related coverage.”
Previous to this rule, and to the ACA generally, insurers typically made one of two decisions about patients with chronic pain: (1) allowed enrollment in their plan but explicitly excluded coverage for services related to the insured’s chronic pain, or (2) denied coverage entirely because of the insured’s preexisting condition of chronic pain. This approach towards chronic pain has barred or (at best) discouraged women from enrolling in their plans. According to the National Women’s Law Center, “90% of women with chronic pain report that the health care system discriminates against female patients.”
Health plans must become compliant by January 1, 2017. But many insurers’ current noncompliance with the provision illustrates the uphill battle faced by many women in pain: to receive healthcare that’s covered by their insurer, or to obtain adequate insurance to cover their condition. A recent article in the Boston College Journal of Law & Social Justice observed that “[h]ealth insurance discrimination frequently centers on the health status of the individual…” as “poorer health status may result in a greater need for healthcare services, which the insurer is incentivized to reduce.” Thus, insurers often discriminate against individuals with poor health histories and preexisting conditions, those with a current condition or illness, or those who are well but may need extensive preventive care to stay healthy.
Exclusion: female pain that’s “all in your head”
Female pain is marginalized, and women are often told that their pain has psychiatric or emotional, rather than physical, causes. Many articles discuss doctors who recall being taught how in medical school to handle these "hysterical females" presenting in the ER. The Campaign to End Chronic Pain in Women estimates that as many as 50 million American women suffer from one or more “neglected chronic pain conditions,” and “[f]or the majority, our health care system offers frustratingly little help.” These include conditions like fibromyalgia, TMJ, and vulvodynia.
A few of the key points about female pain: Women often report pain that’s more frequent and severe than men, but the pain is treated less aggressively. Healthcare professionals take women’s reports of pain less seriously, and they’re more likely to identify female pain as being rooted in mental health diagnoses or “not real.” Women who present in the ER with abdominal pain will wait significantly longer to receive treatment. Forty percent of women with chronic vulvar pain remain undiagnosed after seeing three providers.
According to the National Women’s Law Center report, “[t]he chronic pain exclusion discourages individuals that have chronic pain conditions from enrolling in plans with these issuers because the services to treat their pain are specifically excluded. These plans therefore discriminate against individuals with disabilities and reduced quality of life due to conditions with chronic pain in violation of the ACA.”
A report documenting violations of the ACA by insurers revealed that at least 96 insurers in 12 states offered coverage that fails to comply with the ACA’s nondiscrimination provisions – including exclusions of coverage for chronic pain treatment.
Just one example of a discriminatory plan provision? Two Colorado insurers excluded services for treatment of intractable or chronic pain, as well as treatment at pain clinics or chronic pain centers. Because women disproportionately suffer from chronic pain disorders – including conditions like fibromyalgia and interstitial cystitis – this exclusion serves to bar coverage for women’s pain. Estimates also show that about 6.3 million women suffer from endometriosis and 6 million suffer from vulvodynia – chronic pain conditions affecting only women. If an insurance plan discourages enrollment by those with a health condition, they are construed to be discriminatory benefit designs.
These provisions aren’t uncommon, but they’re devastatingly harmful to women in pain. For example, Aetna’s website provides that “physical therapy in persons whose condition is neither regressing nor improving is considered not medically necessary.” That encompasses many women suffering from pelvic pain, who are thrashing around in the healthcare system without a diagnosis, without improvement, and without help.
“I’m writing you a prescription for DrugYouCan’tAfford, ok?”
Provisions like those in the Colorado plans may become scarce in 2017, given HHS’s mandate that plans reflect gender equity. Here’s what HHS says:
The final rule prohibits sex discrimination in health care including by: Requiring that women must be treated equally with men in the health care they receive…. Under Section 1557, women are protected from discrimination not only in the health coverage they obtain but in the health services they seek from providers[; and] Prohibiting denial of health care or health coverage based on an individual’s sex, including discrimination based on pregnancy, gender identity, and sex stereotyping.
CMS has also urged that it’s likely discriminatory to put most or all drugs needed to treat a specific health condition in the highest cost tiers of a formulary. Plans should also not discourage patients from receiving less conventional treatments: crafting a formulary with the aim of lessening the cost of insuring the chronically ill “such a plan design might effectively discriminate against, or discourage enrollment by, individuals who would benefit from such innovative therapeutic options.”
When the rule was in its notice-and-comment period (when the agency releases a draft and solicits public comment), an alliance of pro-patient organizations provided passionate feedback. A group including AIDS United, the National Fibromyalgia & Chronic Pain Association, The Voice of Midlife and Older Women, the Association of Black Cardiologists, and many others wrote a letter to the government about the discriminatory scheme of drug tiers:
These specialty drugs generally include prescription medicines that are used to treat complex, chronic conditions. Specialty tiers commonly include drugs that are injected, infused, or inhaled….Drugs are assigned to specialty tiers by virtue of their higher cost profiles. The ‘specialty’ designation of these drugs and tiers is not based upon need or efficacy relative to the other tiers. Specialty tiers are designed to limit payer/insurer financial exposure. They do not advance quality care. They do not increase access to medications. They do not protect the patient. They protect profit margins with no consideration given to the impact on access, or quality of outcomes for patients. Specialty tiers are inherently discriminatory. In theory and in practice, specialty tiers are the antithesis of the philosophical, legal and regulatory underpinnings that are the hallmark of legitimate, good faith, nondiscriminatory practices….
The letter continues to deliver a scathing criticism of the prescription drug tier scheme’s discriminatory effect, and the authors’ passion for health equity is palpable and invigorating.
What’s a girl to do?
Finally, the law is migrating toward the side of women in pain. Much work remains to be done to improve access to coverage and care for women in pain, but women should no longer be turned away from insurance companies, as I once was.
1. Speak up. If you’re suffering from chronic pain and your insurer refuses to provide coverage, you have options. I’ve been where you are: I’ve been dropped from coverage, denied insurance, and denied access to necessary care and medications. Whether you have a discrimination claim for the courts or need help navigating the insurance appeals process, I’d love to help. Email me at firstname.lastname@example.org.
2. Read the fine print. If you’re shopping for a new insurance plan, carefully review excluded services. Marketplace plans will be required to adhere to the nondiscrimination rules beginning on January 1st, but that doesn’t mean that plans won’t still try to exclude chronic pain services. They may just do it more craftily, ensuring that they’re not labeled as discriminatory.
3. Ask for help. Reach out to an insurance broker if you’re struggling to sort through the plan options. Call the hospital billing office if you can’t pay your bill.
4. Don’t be afraid of cash-pay services. Massage may help you enormously but not be covered by your insurance. A cash-only physical therapist may provide the best care for you, but she’ll be reimbursed at lower rates or not covered by your HMO. Don’t shy away from these services if they help you. Your focus should be on finding something that helps you recover, not finding something that your insurance plan covers. Remember that the longer you’re in pain, the costlier it’ll be – especially in this age of high deductibles. If you’ve found something or someone who can help, it’s probably the most cost-effective to double down and get the treatment you need, and then get back to living your life.
What are your thoughts? Share them in the comments below!
AIDS United et al., Letter to Leon Rodriguez, Director, Office for Civil Rights, Attn: 1557 RFI (RIN 0945-AA02), (Sept. 30, 2013), available via the Ass’n of Black Cardiologists, http://www.abcardio.org/pdf/Response.pdf.
Aetna, Physical Therapy Services Policy, http://www.aetna.com/cpb/medical/data/300_399/0325.html (Last reviewed 6/1/16, next up for review 3/23/17).
Centers for Medicare & Medicaid Services, U.S. Department of Health & Human Services, Final 2016 Letter to Issuers in the Federally-Facilitated Marketplaces, 337-38 (Feb. 20, 2015).
Valarie K. Blake, An Opening for Civil Rights in Health Insurance After the Affordable Care Act, 36 Boston College J. of Law & Social Justice 235 (June 2016), http://lawdigitalcommons.bc.edu/cgi/viewcontent.cgi?article=1100&context=jlsj.
National Women’s Law Center, State of Women’s Coverage: Health Plan Violations of the Affordable Care Act, 18, https://nwlc.org/wp-content/uploads/2015/08/stateofcoverage2015final.pdf
Office for Civil Rights, U.S. Department of Health & Human Services, Nondiscrimination in Health Programs and Activities, 81 FR 31375 (final rule implementing ACA Section 1557) (eff. July 18, 2016), https://www.federalregister.gov/articles/2016/05/18/2016-11458/nondiscrimination-in-health-programs-and-activities.
Campaign to End Chronic Pain in Women, Chronic Pain in Women: Neglect, Dismissal and Discrimination, 4, http://www.endwomenspain.org/Common/file?id=20
U.S. Department of Health & Human Services, Section 1557: Coverage of Health Insurance in Marketplaces and Other Health Plans, http://www.hhs.gov/sites/default/files/1557-fs-insurance-discrimination-508.pdf