Overview

The Patient Protection and Affordable Care Act– often shortened to “Affordable Care Act” or referred to as “Obamacare”– can offer individuals a plethora of services, including extending a parent’s health insurance coverage to their child until they turn 26.[1] These dependents can utilize this coverage just as their parents would, allowing them access to reproductive healthcare that includes contraception, abortion, STI testing, Papanicolaou tests (Pap smears), obstetric and gynecological services, and more.[2] Paradoxically, however, while the Affordable Care Act extended coverage to adults who would otherwise lack insurance, the use of reproductive health services decreased, and outcomes worsened.

One national study found that for women between the ages of 23 and 25 who switched from self-coverage to parental insurance, there was a statistically significant increase in emergency room visits and a statistically significant decrease in insurance use for contraception and Papanicolaou tests.[3] The study concludes that issues of confidentiality undermine the potential benefits for reproductive health enshrined in the Affordable Care Act; therefore, to fix it, dependents must be in control of their own medical data, not their parents.[4]

Issues of privacy undermine every facet of reproductive health. Many young gay adults face the unique challenge of navigating the healthcare system while simultaneously trying to maintain the appearance of being straight to their parents. However, when a doctor tells them to use pre-exposure prophylaxis (PrEP) as they are at a higher risk of acquiring HIV, they must weigh the loss of confidentiality against forgoing PrEP. According to a study, when faced with this exact scenario, the patient is 70% less likely to use the PrEP if they know their parents would find out.[5] Just as before, this study blames insurance companies, saying that confidential information should stay with the dependent, not be sent to their parent.[6]

The consequences are dire. When people turn away from their health out of fear of what their parents might discover from the insurance company, they put themselves in extreme danger. For sexually active dependents who refuse reproductive health services, an extremely high number do so out of fear of their parents knowing. A study found that people aged 20-25 years who did not engage in STI testing reported confidentiality as the cause at 54.7%.[7] Once more, the issue lies in the insurance. The study found that non-dependents in the age range were the least likely to cite privacy issues as the reason why they did not undergo testing. Dependents, however, must worry about insurance companies sending communications like the explanation of benefits (EOBs) to the policyholder (parent), which could show the testing.[8]

While the Health Insurance Portability and Accountability Act (HIPAA) provides the dependent with general privacy protections, it does not stop health insurance companies from relaying information to the policyholder.[9] As a result, some states have worked to limit the information the policyholder can receive, ensuring that the dependent’s medical history remains private. As of 2023, four states protect dependents’ confidentiality; six allow a written request for confidential communications; four enable insurers to send EOBs to the patient instead of the policyholder; six protect minor confidentiality; four protect STI treatment for minors; three protect minors seeking any service.[10]

The Massachusetts PATCH Act

This assortment of protections among the states is the result of state legislation– where federal statutes and regulations are used, they are inadequate alone, and instead a base upon which a state may build. One quality example of robust state legislation is Massachusetts’ Protect Access to Confidential Healthcare Act (PATCH Act).[11] The 2018 measure introduced numerous privacy protections for dependents, focusing on communications that would divulge information about services rendered. Such protections include explanations of benefits, which are considered under the law to be a summary of payment (SOP).[12] The law creates avenues for confidentiality for emergency services, reproductive health services– including testing, family planning, and more– and additional miscellaneous services. Under the PATCH Act, the dependent can request that no SOP be sent if there is no copay or deductible. If there is an out-of-pocket cost, they can have the physical SOP forwarded to an address of their choice, or they may choose to have an online SOP instead. These communications no longer list certain sensitive services, as well.[13] STI prevention or care, contraceptive services, mental health-related services, gender-affirming care, and overall reproductive healthcare do not appear. Generally, the dependent must make a request to the insurance company for these protections to take effect. Unfortunately, the protections of the PATCH Act are not ubiquitous; the country is failing those who are too scared to use their insurance to get the care they need.

The California Model

Massachusetts’ PATCH ACT is not the only model for confidentiality. The original 2013 framework for California relies on expanding the federal privacy protections in HIPAA.[14] If an individual feels that disclosure of their sensitive information could “endanger” them– meaning subject them to harassment or abuse– they become eligible for the protections.[15] Sensitive information is, therefore, sent to the dependent, not the policyholder. Dependents can also define the scope of information disclosed to the policyholder, and the law defines many areas of sensitive information, such as reproductive health services, that can be hidden. Under the law, a patient does not need to explain any request they make, and neither the insurance company nor the healthcare facility can ever discuss any medical information with the policyholder. The California approach shows that a federal approach that wields HIPAA with slight modifications has the potential to make nationwide changes.[16]

For these reasons, The Pink Gavel has been working tirelessly on new avenues to protect adult dependents; in doing so, this effort would substantially decrease the incidence of STIs and unplanned pregnancies, while increasing the utilization of preventative care.

Rights do not exist if one is too afraid to exercise them. Therefore, The Pink Gavel is committed to securing privacy for adult dependents to protect the next generation of reproductive rights.

Sources

[1] “Young Adults and the Affordable Care Act: Protecting Young Adults and Eliminating Burdens on Businesses and Families FAQs,” Employee Benefits Security Administration, n.d., https://www.dol.gov/agencies/ebsa/about-ebsa/our-activities/resource-center/faqs/young-adult-and-aca.

[2] “Women’s Preventive Services Guidelines,” Health Resources & Services Administration, January 2022, https://www.hrsa.gov/womens-guidelines-2019.

[3] Jacqueline E. Ellison et al., “Association of the National Dependent Coverage Expansion With Insurance Use for Sexual and Reproductive Health Services by Female Young Adults,” JAMA Network Open 3, no. 12 (December 18, 2020): 7, https://doi.org/10.1001/jamanetworkopen.2020.30214.

[4] Ellison et al., 7.

[5] Kelvin L. Moore et al., “Do Confidentiality Concerns Impact Pre-Exposure Prophylaxis Willingness in Emergency Department Adolescents and Young Adults?,” The American Journal of Emergency Medicine 37, no. 6 (June 2019): 1207, https://doi.org/10.1016/j.ajem.2018.11.015.

[6] Moore et al., 1208.

[7] Kendra M. Cuffe et al., “Sexually Transmitted Infection Testing Among Adolescents and Young Adults in the United States,” Journal of Adolescent Health 58, no. 5 (May 2016): 516, https://doi.org/10.1016/j.jadohealth.2016.01.002.

[8] Cuffe et al., 518.

[9] Jamille Fields et al., “Confidentiality & Explanation of Benefits: Protecting Patient Information in Third Party Billing” (Harvard Law School Center for Health Law and Policy Innovation, August 2016), 4, https://chlpi.org/wp-content/uploads/2013/12/Confidentiality-and-Explanation-of-Benefits_issue-brief_August-2016.pdf.

[10] “Protecting Confidentiality for Individuals Insured as Dependents,” Guttmacher Institute, August 31, 2023, https://www.guttmacher.org/state-policy/explore/protecting-confidentiality-individuals-insured-dependents.

[11] Karen Spilka and Kate Hogan, “An Act to Protect Access to Confidential Healthcare,” Pub. L. No. S.2296, § 27, 176O Massachusetts General Laws (2018), https://malegislature.gov/Laws/SessionLaws/Acts/2018/Chapter63.

[12] Spilka and Hogan; “Privacy in Billing,” Mass, n.d., https://www.mass.gov/info-details/privacy-in-billing.

[13] While the services are no longer listed, the healthcare provider is.

[14] Ed Hernandez and Mark DeSaulnier, “Confidentiality of Medical Information Act,” Pub. L. No. SB 138, § 56 et seq., California Civil Code (2013), https://plus.lexis.com/api/permalink/40482010-af57-4a5b-92bd-f7898b46c95b/?context=1530671.

[15] Hernandez and DeSaulnier.

[16] Rachel Benson Gold, “A New Frontier in the Era of Health Reform: Protecting Confidentiality for Individuals Insured as Dependents,” Guttmacher Institute, 2013, https://www.guttmacher.org/gpr/2013/12/new-frontier-era-health-reform-protecting-confidentiality-individuals-insured-dependents; California has updated certain protection laws after Dobbs. Daniel F. Gottlieb, Alya Sulaiman, and Reuben Bank, “California’s New Reproductive Privacy Laws Ab 352 and Ab 254 Create Complexities for Health Information Sharing,” McDermott Will & Emery, November 17, 2023, https://www.mwe.com/insights/californias-new-reproductive-privacy-laws-ab-352-and-ab-254-create-complexities-for-health-information-sharing/.