Learn About Laws Related to Health Care
Several health care laws exist at the federal level, and while most of these laws are not directed specifically at cancer care, their content addresses protections and benefits that affect people with cancer as well as their families. You should become familiar with these laws to understand your legal rights regarding access to care, insurance protection, benefits and anti-discrimination.
The descriptions of the laws that follow provide only highlights of the most important information for people with cancer. Also note that eligibility criteria and definitions of such terms as “employer,” “employee” and “pre-existing condition” vary across these laws. For more details and definitions, refer to the contact information for the governing bodies of the laws.
Governing bodies of the laws
Find more information on these laws on the websites of their governing bodies, or call for additional details.
- Affordable Care Act
- Phone: 800-318-2596
- Americans With Disabilities Act
- Phone: 800-514-0301
- Consolidated Omnibus Budget Reconciliation Act (COBRA)
- Family and Medical Leave Act (FMLA)
- Phone: 866-487-9243
- Health Insurance Portability and Accountability Act (HIPAA)
- Hill-Burton Act
- Phone: 800-638-0742
- Social Security
- Phone: 800-772-1213
- U.S. Department of Veterans Affairs – Agent Orange
Patient Protection and Affordable Care Act
The Patient Protection and Affordable Care Act of 2010 is also known as the Affordable Care Act or the Health Reform Act. It regulates health insurance coverage in the United States in the hopes of making it more accessible and affordable while still ensuring high-quality care.
Some key components of the law related to access to care include the following:
- The act enables adult children to stay on a parent’s plan until their 26th birthday.
- Health insurance companies cannot deny coverage for a pre-existing condition.
- Health insurance plans cannot stop coverage when a person becomes sick.
- Enhanced preventive benefits and screenings are available at no cost for all insured parties.
- A formalized list of “essential health benefits” ensures all insurance policies provide minimum coverage for services within 10 categories of care (see box).
- Annual and lifetime limits on essential health benefit services have been removed, which is particularly helpful for cancer patients.
- Creation of “marketplaces” helps consumers find and enroll in affordable health coverage.
- Coverage has been improved for patients participating in clinical trials.
- Employer-based group plans cannot impose waiting periods of more than 90 days for coverage.
The Affordable Care Act ensures that health insurance companies will not be allowed to charge higher fees based on a person’s current or previous health status, and it limits the amount of money people must pay for out-of-pocket expenses and deductibles. Insurance companies are no longer able to place annual or lifetime limits on care and benefits considered part of the essential health benefits. However, they are permitted to put a yearly dollar limit and a lifetime dollar limit on nonessential health benefits. Many people are also eligible to receive help paying their monthly premiums through Premium Health Insurance Credits, which are frequently referred to as “subsidies.”
Quality of care
The Affordable Care Act sets standards for the quality of care for all people, especially with regard to the prevention and treatment of cancer. First, the law mandates that health insurers eliminate co-pays for prevention services recommended by the U.S. Preventive Services Task Force. For example, a co-pay is not required for colorectal cancer screening for adults older than 50, for annual mammograms for women older than 40, or regular Pap smear testing. In addition, all new health insurance plans must include coverage of cancer treatment, including treatment focused on pain management and other quality-of-life issues and follow-up care. The law also provides an increased coverage level for those participating in a clinical trial.
Health insurance marketplaces
All U.S. residents can now find and secure health insurance in their region through a central online hub. This service allows users to compare available plans and enroll directly in a plan that meets their needs. Navigators and application counselors are also available in each state to help patients make informed decisions during the selection process. To be directed to your state’s marketplace, visit www.healthcare.gov. Unless you have a special circumstance, you can only enroll in an insurance plan through the marketplace during special enrollment periods every winter. The next open enrollment period for most marketplaces begins Nov. 15, 2014, and ends Feb. 15, 2015. Be sure to check the open enrollment period for your state’s marketplace because it may be different.
The Affordable Care Act is a complex law and includes many features beyond what is described here. Visit www.healthcare.gov to learn what the law means to you.
What Should I Know About “Essential Health Benefits”?
Essential health benefits are defined within the Affordable Care Act as a set of health care services that must be covered by certain plans.
Insurance and small group policies must cover these benefits in order to be certified and offered within the Health Insurance Marketplace, and all Medicaid state plans also include essential health benefits. The Affordable Care Act ensures individual and small business health plans offered outside of the marketplace must also contain this comprehensive package of items and services.
Under the Affordable Care Act, essential health benefits are defined to include the following general categories. Under the law, each state may add or further define the services included within each category:
- Ambulatory patient services (outpatient care you get without being admitted to a hospital)
- Emergency services
- Maternity and newborn care (care before and after your baby is born)
- Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)
- Prescription drugs
- Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities or chronic conditions gain or recover mental and physical skills)
- Laboratory services
- Preventive and wellness services and chronic disease management
- Pediatric services (including oral and vision care)
Women’s Health and Cancer Rights Act
The Women’s Health and Cancer Rights Act requires that most insurance plans that cover mastectomies must also cover breast reconstruction. Under the law, mastectomy benefits must cover the following:
- Reconstruction of the breast that was removed by mastectomy
- Surgery and reconstruction of the other breast to make the breasts look balanced after mastectomy
- Any external breast prostheses (breast forms that fit into your bra) that are needed before or during the reconstruction
- Any physical complications at all stages of mastectomy, including lymphedema
The law applies to group health plans (started on or after Oct. 1, 1998) that cover the medical and surgical costs for mastectomies. The deductible and co-pay (or co-insurance) for breast reconstruction must be the same as those for other covered surgeries.
Consolidated Omnibus Budget Reconciliation Act (COBRA)
COBRA is designed to help people access health insurance coverage if they lose their coverage through an employer for an established reason (“qualifying event”). The law applies to an employee or an individual covered by an employee’s plan (such as a spouse). Qualifying events include stopping work, reducing work hours, divorce or legal separation, or death of the employee.
COBRA does not provide free coverage. Rather, it’s an option to keep your same insurance coverage at the employer’s group rate (plus a 2 percent administration fee) without an interruption of coverage. Because most employers frequently contribute funds to pay a portion of the monthly premium, patients using COBRA should expect to pay more than the amount paid during employment. In most cases, COBRA can be used for up to 18 months; longer coverage is available in some situations.
Health Insurance Portability and Accountability Act (HIPAA)
When most people hear “HIPAA,” they think of privacy issues related to health care information. Privacy is an important component of HIPAA, but the law was established in 1996 to protect insurance coverage by making it more “portable” when moving from one job to another and/or when moving from one health insurance plan to another. Many of the aspects of this law were also addressed as part of the Affordable Care Act.
The Family and Medical Leave Act (FMLA)
Established in 1993, FMLA requires that employers (with at least 50 employees) provide up to 12 weeks of unpaid, job-protected leave to eligible employees for certain family and medical reasons. The leave can be for the employee’s serious health condition or for the serious health condition of an immediate family member, defined as a spouse, child (typically younger than 18 years) or parent. The act defines “serious health condition” in several ways, most of which apply to cancer. The law also requires that the employer maintain the same terms of the employee’s health insurance benefits for the duration of the covered leave. If you pay all or part of the health insurance premium, you must make arrangements to continue to pay your portion during the leave. Leave can be taken all at once or in shorter blocks of time, but it must all be related to a single reason. You can also use FMLA to work part-time instead of full-time for a certain period.
You do not need to show medical records to your employer to use FMLA, but your employer does have the right to request that you provide medical certification demonstrating evidence of a serious health condition for you or the family member for whom you are serving as a caregiver. A doctor must complete and sign this certification note; in general, the necessary information includes when the illness started, whether you will need a single block of time or shorter blocks, an estimated time when you can return to work, and whether additional treatment will be needed after your leave is completed.
In 2008, FMLA was expanded to provide longer leaves for an employee (up to 26 work weeks) to care for an armed forces member with a serious illness. The employee can be a child, parent or next of kin of the armed forces member.
Social Security Disability benefits
In some instances, people with cancer may be entitled to Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits. The primary eligibility requirement is disease that is severe enough to prevent you from performing “substantial gainful activity.” The Social Security Administration requires medical documentation of the type, extent and site of the primary, recurrent or metastatic tumor; an operative note (if surgery was done); a pathology report; records noting recurrence, persistence or progression of disease; details on drugs and/or radiation treatment; response to treatment; and the presence of treatment-related side effects.
The criteria for eligibility vary according to the type of cancer. The number of applications for SSDI (for all types of disability) is very high, and more than 60 percent of initial applications are denied.
Several hundred cancers are on the Compassionate Allowances list, which typically qualifies a person with a minimum amount of objective medical information while also expediting the approval time frame. Once approved, a disability designation serves as a gateway for additional benefits and frequently provides broader eligibility for charity assistance.
Established in 1946, the Hill-Burton Act is the earliest of the government health care-related laws. The law requires that any medical care facility that used federal funds for construction (to build, expand or renovate) must provide a percentage of its services free or at a low cost. Eligibility for free or low-cost care is based on family size and income; a person whose income is within the poverty guidelines is eligible for free care, and low-cost care is provided for people with incomes somewhat higher than those considered to be at the poverty level.
A facility sets aside the money for care under the Hill-Burton Act at the beginning of the year, and the funds are used on a first-come, first-served basis. Each facility determines the services to be provided at low or no cost. The act does not cover services that are covered by private insurance, Medicare or Medicaid. All Hill-Burton facilities are listed at http://www.hrsa.gov/gethealthcare/affordable/hillburton/facilities.html.
U.S. Department of Veterans Affairs (VA)
The VA created programs to help veterans receive health care related to hazardous exposures. Some of these have been linked to a wide range of cancers. For example, Agent Orange (Vietnam War) has been linked to lymphoma, lung cancer, multiple myeloma, prostate cancer, soft tissue sarcoma and chronic lymphocytic leukemia. As a veteran, an exposure to a hazardous material may entitle you to free medical care and other benefits as long as you have the ability to prove that your illness began during (or was worsened by) your military service. Visit http://benefits.va.gov/compensation/claims-postservice-exposures-index.asp to determine if you’re eligible and to learn more.
Genetic Information Nondiscrimination Act (GINA)
Genetic testing has become an important factor in the diagnosis and treatment of some types of cancer. For example, genetic testing can detect the presence of hereditary genetic abnormalities that increase the risk of breast and colorectal cancers. Under GINA, employers with more than 15 employees cannot discriminate on the basis of genetic information in hiring, firing, layoffs, promotions, assignments or salary. The law protects against discrimination by employers and health insurers on the basis of a person’s own genetic tests, genetic tests of family members, or the presence of a genetic disease or disorder in one or more family members.
With regard to health insurers, denial of coverage and higher premiums based on either the results of genetic testing or the use of genetic counseling are not allowed under GINA. The law applies to group health plans, individual plans and Medicare supplemental plans. GINA also bans insurers from requesting or requiring genetic tests.
Americans with Disabilities Act
Although people with cancer prefer not to think of themselves as “disabled,” they are protected under the Americans with Disabilities Act. The law protects against discrimination in the workplace and applies to private employers who employ 15 or more people, as well as labor unions, employment agencies and government agencies. Under the law, all employees, regardless of medical condition or medical history, must be treated equally, especially in terms of the benefits offered to them. The law protects not only an employee but also his or her spouse or dependent children, and it prohibits employers from screening out a potential employee who has a child with cancer (or a disability).
Learning about the benefits available to you and the processes for getting these benefits can consume a great deal of time. Consider asking a family member or friend for help in searching for information and/or completing applications if your time and energy are limited. Search the Financial Resources section to find several nonprofit organizations that can help you with financial matters, including benefits related to these federal programs.
Annual and Lifetime Limits
For insurance plans beginning on or after Jan. 1, 2014, group health plans are prohibited from imposing annual limits on the dollar value of essential health benefits. That is, patients cannot be denied services included within this list because their care exceeded a specific dollar value during that year. In addition, you cannot be subject to lifetime limits for care within the essential health benefits during the entire time you are enrolled in a plan.
To understand what services within your plan are not considered essential benefits and may be subject to limits or denials, request this information directly from your insurer. Grandfathered individual plans are excluded from the annual limit prohibition but are not able to impose lifetime limits for essential health benefits.