Frequently Asked Questions
About Patient Advocate Foundation
What does PAF do?
Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Are your services free?
Yes. Patient Advocate Foundation provides case management services, educational materials and live chat services at no charge to patients.
How can I get case management assistance?
If you have a chronic, debilitating or life threatening illness and would like to have direct communication with a member of PAF Patient Services, please call us at 800-532-5274. We have access to a wide variety of resources and can offer intervention if necessary.
Can you help me find a doctor?
We are not able to assist with direct coordination of care issues. To assist you in your search for a new physician, PAF suggests that you visit http://www.ama-assn.org. This website allows you to search for a physician in your area, by medical specialty, and view their credentials. You may also want to ask friends or relatives for suggestions or attend a support group meeting.
How can I get involved with patient advocacy?
National Patient Advocate Foundation, PAF's companion organization, is dedicated to providing the patient's voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.
Join the NPAF Advocates Network! NPAF's Advocates Network keeps volunteer advocates informed of current state and federal initiatives that affect the healthcare of Americans. By knowing the key points, you will be able to effectively bring your voice to legislators who sit in a position to make that difference happen. Volunteers are always needed in all states and we appreciate your concern.
Do you provide medical advice?
Providing medical advice is not within the scope of our services. Speaking with your physician would be the best way to obtain answers regarding your health condition and/or symptoms. If necessary, you may want to seek a second opinion.
How can I apply for a PAF scholarship?
The information regarding scholarships can be found in the Scholarships for Survivors Program on the website. Information necessary to apply for the Patient Advocate Foundation Scholarship program is listed in this section. Please use the application available on the website and submit with the required information by the stated deadline.
How can I get brochures from PAF?
We will send you up to 25 brochures at no cost. Click here for a complete listing of all PAF publications available. You may also view and download our publications from the website. If you would like to order publications, please send a request.
Do you offer financial assistance? Where can I get financial assistance for my living expenses such as rent, utilities and food?
Patient Advocate Foundation Patient Services division and Case management departments do not offer direct financial assistance. If you are in need of co-pay assistance, please contact the Co-Pay Relief Program directly at 1-866-512-3861 or at http://www.copays.org/. For a listing of resources that may offer additional financial assistance options please visit the Resources area of the website.
Can I participate in a clinical trial?
Many patients choose to participate in clinical trials in order to receive the most advanced and newest treatments. The National Institutes of Health (NIH) offer many treatment choices. Since NIH is operated by the US Government and is supported by taxpayer dollars, all care offered at this facility is free of charge. To inquire about recruiting clinical trials, please call 800-411-1222. Many programs arrange for transportation for the patient between their home and the NIH campus in Washington DC.
How can PAF help with medical expenses?
PAF cannot provide direct financial assistance with your medical bills. If you need assistance negotiating with a provider, you may want to contact PAF Patient Services. You can also visit http://www.copays.org for more information about financial assistance for pharmaceutical therapies that is available to eligible patients.
How can I get help with funeral expenses?
If your loved one had no assets and was eligible for public assistance, you should contact either the Social Services/Medicaid case worker or Social Services General information to inquire about indigent funeral assistance. If he/she was a Veteran, you should contact the Veterans Administration to inquire about available benefits. You may also contact the Social Security Administration for assistance. If you are unsure of how to proceed, many funeral homes have access to information regarding the availability of state or local assistance.
I am uninsured and cannot afford my medication. Is there any assistance available?
You should apply for medication assistance through the manufacturer. To locate manufacturer Patient Assistance Programs you may want to visit www.needymeds.com and research your prescribed medications by generic or brand name. This website has a very comprehensive listing of pharmaceutical manufacturers' financial assistance programs that benefit needy, uninsured and low income patients.
I have just been diagnosed with cancer, and I am uninsured. What do I do now?
You should immediately apply for Medicaid at your local Department of Social Services. If you are uninsured, you will need to seek treatment and/or testing at a facility that offers charity care. Contact your local hospitals and ask to speak with a social worker or financial counselor to find out if they have any charity care/financial hardship programs. You can also locate a community health clinic for free or sliding fee services. Your other option would be to make payment arrangements with a physician willing to see you on that basis. For medical bills already incurred, you will need to find out if that facility/provider has a financial assistance program.
Insurance Related, Medicare or Medicaid
How can I get insurance if I have a pre-existing condition?
You may visit http://www.healthinsurance.org/riskpoolinfo.html to determine whether the state in which you reside offers a State Comprehensive Health Insurance Program also called a "risk pool". These programs offer access to health insurance for patients who are unable to obtain coverage elsewhere. Also, be sure to elect COBRA coverage when leaving an employer in order to prevent a gap in insurance coverage. If there has been no break in coverage and your spouse has insurance available through his or her employer, you should be able to access this benefit because of your 'qualifying event.'
I have an HMO and want to go out of network. What are my rights?
HMOs negotiate to include a wide variety of cost effective medical providers in their treatment network. You will need to refer to your insurance policy to determine benefits that are available for out-of-network care. You have the option to make a personal choice regarding the care you receive; however, your insurer is not liable to reimburse your expenses if the care is received outside of the HMO's contractual obligations.
How should I appeal a denial by my insurance company?
You may benefit from our publication "Your Guide to the Appeals Process." It contains practical information about filing an appeal and includes useful sample letters. To file an effective appeal you must know the denial reason and provide evidence to support your belief that the claim is valid. It is very beneficial to include peer review or medical journal articles supporting the effectiveness of your prescribed treatment.
If I become eligible for Medicare, how long do I have to enroll in Medicare Part D?
You have seven months to enroll from your Medicare effective date.
How can I get assistance with the 20% that Medicare does not cover?
Contact your local hospitals and ask to speak with a social worker or financial counselor to find out if they have any charity care/financial hardship programs. Another option is to make payment arrangements with a physician willing to see you on that basis. For medical bills already incurred, you will need to find out if that facility/provider has a financial assistance program. If you are in need of co-pay assistance, please contact our Co-Pay Relief Program at 1-866-512-3861.
Why was my Medicaid taken away when I became SSDI eligible?
Your first SSDI payment may place you above the Medicaid income limit. Check with your Medicaid caseworker to determine if your state offers a cost share or spend down program, which may allow you to continue your Medicaid benefits.
How can I get Medicaid?
Contact your local human services office for a Medicaid application. Your state may require that you be deemed disabled before becoming eligible for Medicaid. Be prepared to provide documentation including proof of income, medical records and proof of address. For more information, visit http://www.cms.gov.
Employment & Disability Related
If I change jobs will I lose my ability to elect new health care coverage?
Some employer health plans do not cover pre-existing medical conditions. HIPAA limits the time period of these restrictions so that most plans must cover a person's pre-existing condition after 12 months. Under HIPAA, your new employer's plan will be required to give you credit for the length of time that you had continuous health coverage that will reduce the 12-month exclusion period. If at the time you change jobs you have had 12 months of continuous health coverage (without a break in coverage of 63 days or more), you will not have to start over with a new 12-month exclusion for any pre-existing conditions. When leaving an employer be sure to elect COBRA to avoid any breaks in coverage. For more information visit www.dol.gov.
I feel as though I am being discriminated against at work because of my illness. What should I do?
You may want to view or download our publication "First My Illness, Now Job Discrimination". This publication will advise you of steps you can take toward resolution of your issue. Keep your desired outcome in mind. Your first step should be to file a complaint with your local office of the EEOC. www.eeoc.gov will offer more information and provide contact numbers for your local EEOC office.
Once your claim is filed with the EEOC, they will provide you with a "right to sue" document that will specify the length of time you have to obtain legal counsel and file suit. You also need to be aware of your state's employment discrimination laws. You may also consider contacting your State Attorney General for legal information.
I need to take time off from work due to my illness. Is my job protected?
You may want to view the laws that apply to your situation on www.dol.gov. Select "A-Z Index" and then choose "Family and Medical Leave Act (FMLA)" to view information about this Federal law. The section under frequently asked questions will answer a number of your inquiries. If you work for a company that has at least 50 employees and you have been there for at least 12 months, you are entitled to 12 weeks of unpaid leave under FMLA (Family Medical Leave Act). Under FMLA, an employee that has been with their employer at least 12 months prior to their leave of absence is protected under the law from losing their job if they need to take time from work for the reasons specified under the law (only if they work for a company with 50 or more employees). Employees are eligible for 12 weeks of unpaid leave per year. This time can be used in increments that total 12 weeks in a 12 month period. Once this time is exhausted, the employer can fill your job with another applicant. You would then have to reapply for the position. This also means your medical benefits can be terminated making you eligible for COBRA. You can also research COBRA in the same website.
What is the difference between SSI and SSDI?
Social Security Disability has two programs. The first, Social Security Disability Insurance (SSDI), is based on a worker's earnings history. Please refer to your Social Security Disability estimate document sent yearly prior to your birthday for your estimated benefit. Supplemental Security Income (SSI) is for patients who have never worked or have a very low income. SSI offers a fixed benefit of approximately $674.00 per month depending upon geographic location.
I need assistance with applying for Social Security Disability (SSDI).
You may visit the Social Security Administration's website, http://www.ssa.gov, to learn more about the Social Security Disability process. Use the following link to view the Evidentiary Requirements and Listing of Impairments used by the SSA in the benefit determination process: http://www.ssa.gov/disability/professionals/bluebook/index.htm. Your disability must meet the criteria of SSA's guidelines and have the medical documentation to support your claim. Often patients are denied disability benefits the first time they apply, and an appeal is necessary. It is crucial that you have a letter from your physician stating that you will be unable to work for a period of 12 months or longer. It may be beneficial to look in your local yellow pages directory to find an attorney who handles Social Security cases. They typically collect payment after the client is awarded disability. You can also view our publication Your Guide to the Disability Process. This book will guide you through the entire disability process.
How can I get my Social Security Disability application expedited?
Social Security Disability can only be expedited if your life expectancy is six months or less. Contact your Social Security caseworker to be sure that your case has been flagged as a TERI case, which triggers expedited eligibility determination. Even with expedited approval you may still have to wait five months before receiving your first payment.
I have not heard anything from Social Security regarding my SSI/SSDI case. Can I check the status?
Yes. In accordance with Federal law, state agencies known as Disability Determination Service (DDS) make disability decisions for SSA. Each state's DDS has a published phone number to be used to check the status of your case. Your local SSA field office also has the phone number for your state's DDS.
Your Medical Rights
Can my doctor refuse to provide me with my medical records?
Your medical records are legally the property of the medical practice or
doctor that possesses them. Legally and ethically, they can charge a fee to
copy your record to covers costs of staff time, equipment usage and supplies needed to honor your request. If you are unable to afford the fees, you need to have a conversation with either your doctor or office manager to request a mutually agreeable alternative arrangement.
I am not a US citizen. What can I do to get treatment in the US?
The availability of financial support for non US residents is extremely limited. Most non-resident patients arrive with funding from their families, their own savings, or sponsorship from a philanthropic organization. Some patients do find the care they need through clinical trials. The patient, the family or the physician can inquire about currently recruiting trials and their locations. Try the following web sites: www.nih.gov (National Institutes of Health - highly rated care), www.nci.nih.gov (National Cancer Institute - also high rated), www.clinicaltrials.gov (Additional information to make an informed decision).
How can I relate my concerns to my local Member of Congress?
Visit www.congress.com. On the home page, choose "US House of Representatives" and then enter your zip code + four in the search box found in the upper left corner of the United States House of Representatives web page.