Access to proper health care and insurance is important to everyone, especially people living with chronic health conditions such as Marfan syndrome and related disorders. The National Marfan Foundation continues to advocate for government policies and resources that improve access to health care for the Marfan syndrome and related disorders community. Still, it is important to understand your personal options and how to access affordable quality health care. Use this information to find and maintain the best health care for you. Educate Yourself
Take Action
Don't Quit
Glossary
EDUCATE YOURSELF:
Reading this information is a good first step toward fully knowing your needs and rights regarding health care.
Educate yourself about Marfan syndrome and its symptoms.
• Browse the NMF website, including “About Marfan Syndrome” and “Living with Marfan Syndrome.” Know what the future may hold for you in terms of potential treatment including surgeries and consider how this could impact health care decisions.
• Call or e-mail the NMF Information Resource Center at 1-800-8-MARFAN ext. 26 or support@marfan.org.
• Browse the National Institute of Health website to learn more (website available in English and Spanish).
Learn about your health insurance.
If you already have health insurance through your own means or from an employer, carefully read your insurance plan. Some things to keep in mind are:
• Does your plan include disability services?
• Does it cover major surgeries? If so, what percentage of the cost does the plan cover?
• Does it provide discounts on medication?
• Are you allowed to visit the health care provider of your choice? If not, does the plan provide in-network access to doctors that are familiar with Marfan syndrome and related disorders?
• Does it cover out of state doctors/surgeons?
• Does it cover treatment for genetic disorders/pre-existing conditions?
• Are you responsible for a co-payment?
Be aware if your insurance plan is not right for you. Know that you may switch your plan to better fit your needs.
Know the rights and restrictions of being insured by an employer:
• Employers are not required to offer health coverage to their employees and/or their dependents.
• You can and should find out about a prospective employer’s health benefits. Check the list of excluded benefits in particular.
• An employer cannot deny a job offer based on a disability.
• You cannot be excluded or dropped from your group health plan due to a Marfan syndrome or related disorder diagnosis. If you, your spouse, and/or dependent(s) are eligible for group health benefits from an employer, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) will protect you from losing your health insurance.
• Even if you do not want your new employer to know that you have Marfan syndrome or a related disorder, failure to disclose information about your medical history or a pre-existing condition if asked by a health plan is considered fraud.
• If your child has Marfan syndrome or a related disorder and is currently insured by your/your spouse’s employer, you should examine your manual to know exactly when your child will no longer be covered. This may occur at a specific age, when he or she enrolls in a student health plan, or when your child moves away from home. Your child with Marfan syndrome or a related disorder will be protected under the provisions of the Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) and HIPAA if he or she has been covered under a group health plan in the past. If you want to put your child on his or her new school’s health insurance, carefully read the plan before doing so.
Learn about personal insurance options.
If you do not have health insurance or you feel that your current plan is not right for you, consider your insurance options. Some common health insurance plans in the US include:
• Health Maintenance Organizations (HMO)
• Indemnity Plans
• Point of Service Plans (POS)
• Preferred Provider Organizations (PPO)
• Medicaid
• Medicare
Take an eligibility quiz to find out whether you qualify for low-cost public health insurance programs.
Things to think about:
• Only Maine, Massachusetts, New Jersey, New York, and Vermont currently guarantee health coverage for individuals regardless of health status. People living elsewhere are likely to be denied. Also, individual insurance may be more expensive than group or COBRA coverage. The Foundation for Health Coverage Education offers a state-by-state guide of health-care choices and has a help line open 24 hours a day.
• The Department of Health and Human Services has a guide to low-cost insurance programs especially for children.
• If you are medically disabled, find out if you are eligible for Social Security benefits like Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), Medicare, and Medicaid.
TAKE ACTION:
Once you understand your health care options, decide on an insurance plan. Marfan syndrome and related disorders affect people in a number of ways and are different for each person living with the disorder. Keeping in mind the specific symptoms that most affect you/your child – or symptoms that could affect you in the future— and the great likelihood of needing medication(s) and surgeries for heart, eye, and orthopedic issues, choose the plan that best fits your needs.
Fight for your rights:
• If you are currently insured under an inadequate plan provided by your employer, consider speaking with someone in your Human Resources (HR) department. They may be willing to negotiate a different health plan in the future that better suits your medical needs.
• If you are in between jobs, you may be eligible to continue being covered by your former employer’s health insurance plan through the Family Medical Leave Act, COBRA, and State Continuation Laws.
• Apply for Medicare and/or Medicaid if you are eligible.
• Remember that you do not have to accept your insurance company’s denials. Exercise your right to appeal a health plan decision. Also remember that you may appeal a case more than once. Tips to challenge insurance company denials.
• Know how to handle medical bills. Remember: don’t ignore your bills; look for errors in your bills; negotiate the price down; don’t be embarrassed to ask for financial assistance; and work out a payment plan.
• Click on these links to find: a medical billing advocate; to determine whether or not you are eligible for low-cost public health insurance; and/or low-cost insurance for children.
If you do not have/cannot afford insurance:
• Know where to go for help: The Georgetown Health Policy Institute Website has a state-by-state consumer guide to getting and keeping health insurance.
• Know how to negotiate reduced or free care: Many hospitals have policies in place to offer free or reduced-price care for those who are uninsured. Talk with your doctor about getting care at a reduced price.
• Connect with your community services. Visit the Health Center Directory to find a list of community health clinics in your area.
• Remember: It’s never too early to begin planning financially for the future – evaluating your income, assets, debts, benefits, and other resources is essential to being well-prepared for your future.
• In an emergency, do not hesitate to go to the nearest hospital emergency room even if you, or your loved one with Marfan syndrome or a related disorder, have no health insurance. The hospital must stabilize anyone in an emergency, but they generally do not provide follow-up care. Anyone without health insurance in this situation should ask about the hospital’s discounted rates, payment plans, and their policy regarding care for the uninsured. Hospital and clinic social workers or billing departments can often help identify sources of low or no-cost care in your community and help you apply for Medicaid/Medicare and other programs available in your area.
• Going without health coverage for more than 63 days will result in the loss of some legal protections, so we urge everyone to stay insured if at all possible.
DON'T QUIT:
• Don’t let setbacks keep you from fighting for your right to proper health care. Keep up with your appeals, medical bills, and recent government actions. Be persistent.
• Don’t be afraid to ask for help. Call or e-mail the National Marfan Foundation Information Resource Center at 1-800-8-MARFAN ext. 26 or support@marfan.org. Talk to friends and family members.
• Spread your knowledge. What you know about accessing health care can help you or a loved one in the future.
• Being your own best advocate may seem like a lot of work now, but it can save you more work and money in the future.
GLOSSARY:
Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA): A federal act which requires each group health plan to allow employees and certain dependents to continue their group coverage for a stated period of time (usually 18 months) following a qualifying event that causes the loss of group health coverage. Qualifying events include reduced work hours, death or divorce of a covered employee, and termination of employment. Definition from: http://www.agencyinfo.net/iv/medical/health-glossary.htm#C COBRA Website: http://tinyurl.com/yaq8azn Family Medical Leave Act: Under this act, covered employers must grant an eligible employee up to a total of 12 workweeks of unpaid leave during any 12-month period for one or more of the following reasons: • for the birth and care of the newborn child of the employee; • for placement with the employee of a son or daughter for adoption or foster care; • to care for an immediate family member (spouse, child, or parent) with a serious health condition; OR • to take medical leave when the employee is unable to work because of a serious health condition.
Definition from: http://www.dol.gov/esa/whd/fmla/
Health Insurance Portability and Accountability Act of 1996 (HIPAA): This federal act protects people who change jobs, are self-employed, or who have pre-existing medical conditions. It provides benefits to these individuals that are similar to the benefits of employees in large group plans. It also ensures that prospective or current employees under a group health plan are not discriminated against based on health status.
Definition from: http://www.agencyinfo.net/iv/medical/health-glossary.htm#H
Information about HIPAA: (http://www.cms.hhs.gov/hipaaGenInfo/)
Health Maintenance Organization (HMO): Under this health care system, subscribers pay a monthly fee. The subscriber chooses a primary health care provider. In order to see a specialist (i.e., an optometrist or a podiatrist), the primary health care provider must provide a referral. Otherwise, the subscriber may need to pay some or all of the specialist’s charges.
Information about HMOs: http://www.agencyinfo.net/iv/medical/types/hmo-ppo-pos.htm
Human Resources (HR): The Human Resources department of a company organizes and supervises the company’s employee activities. This department is generally in charge of recruiting and hiring new employees, training current employees, and managing employee benefits and retention.
Indemnity Plan: Under this health care system, the subscriber generally has to pay an annual deductible, but they may visit the provider of their choice. An indemnity plan reimburses the subscriber for their medical expenses regardless of who provides the service; although in some cases the reimbursement amount may be limited. The coverage offered by most traditional insurers is in the form of an indemnity plan.
Information about indemnity plans: http://www.agencyinfo.net/iv/medical/types/indemnity-managed.htm
Medical Billing Advocate: A medical billing advocate is a hired professional who can help you cut your medical costs by keeping track of your medical bills, looking for errors in your bills, and making sure that your insurance payments are accurate.
Information about medical billing advocates: http://www.billadvocates.com/HOME/tabid/36/Default.aspx
Point of Service Plan (POS): A type of managed health care system that combines characteristics of the HMO and the PPO. Like an HMO, subscribers pay no deductible and usually only a minimal co-payment when they use a health care provider within their network. Subscribers also must choose a primary care physician who is responsible for all referrals within the POS network. If a subscriber chooses to go outside the network for health care, POS coverage functions more like a PPO. The subscriber will likely be subject to a deductible, and their co-payment will be a substantial percentage of the physician's charges (usually 30-40%).
Definition from: http://www.agencyinfo.net/iv/medical/types/hmo-ppo-pos.htm
Preferred Provider Organization (PPO): This type of managed health care system gives access to services from a specific network of doctors at a discounted price. Subscribers to a PPO may go to a doctor in the plan’s network, with a standard co-payment for each visit. If a subscriber visits a doctor that is out of the plan’s network, they may have to pay a deductible and a higher percentage of the cost of the services than they would for in-network doctors.
Information about PPOs: http://www.agencyinfo.net/iv/medical/types/hmo-ppo-pos.htm
Medicaid: A health insurance program for people with low income. It was created in 1965 as a joint federal-state program to provide medical assistance to aged, disabled, or blind individuals (or to needy, dependent children) who could not otherwise afford the necessary medical care.
Definition from: http://www.agencyinfo.net/iv/medical/types/medicaid.htm
Information about Medicaid: http://www.cms.hhs.gov/home/medicaid.asp
Medicare: A federal government hospital expense and medical expense insurance plan primarily for elderly and disabled persons. Includes:
• Medicare Part A., which provides basic hospital insurance coverage automatically for most eligible persons.
• Medicare Part B., a voluntary program that is part of Medicare and provides benefits to cover the costs of physicians' services.
• Medicare Part C., which expands the list of different types of entities allowed to offer health plans to Medicare beneficiaries.
Definition from: http://www.agencyinfo.net/iv/medical/health-glossary.htm#M
Information about Medicare: http://www.cms.hhs.gov/home/medicare.asp
Social Security Disability Insurance (SSDI): When a worker's earnings are stopped or reduced for a year or more because of a severe impairment, the worker and eligible family members can receive monthly cash benefits from SSDI. Benefits continue until the individual dies or is able to work again. Workers are considered disabled if they cannot do any work in the economy because of their medical condition(s). The disability and the inability to work must last or be expected to last for at least a year or result in death.
Definition from: http://www.aarp.org/research/socialsecurity/ssdi/aresearch-import-364-FS92.html
Supplemental Security Income (SSI): A Federal income supplement program funded by general tax revenues. It is designed to help aged, blind, and disabled people who have little or no income by providing cash to meet basic needs for food, clothing, and shelter.
Definition from: http://www.ssa.gov/ssi/
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