Get the Help and Support You Need

Many people are fortunate to have the resources and support they need to succeed in their fibromyalgia journey. But what about those who aren’t so fortunate? What happens to those who do not have the financial means to pursue key treatment options, or the energy to deal with the frustrating obstacles encountered along the way, or the support of a loved one?

Beside pain and fatigue—and a sense of uncertainty—many people affected by fibromyalgia face these additional challenges. Fortunately, they don’t have to go it alone; there are a variety of avenues that can help ease the often taxing journey.

1. Support System: Trying to deal with FM on your own can be extremely lonesome and draining. A support group is an excellent way to connect with others who are being treated for FM—and also provides an avenue to exchange valuable information, such as referrals to local healthcare professionals and helpful coping strategies. These groups

   "You don’t have to go it alone; there are a variety of avenues that can help ease the often taxing journey."

   also provide a safe place to share concerns, challenges and triumphs with people who have first-hand knowledge of what you are going through.
   Check the NFA’s website for support groups in your area. (Click here for a directory.) If you do not find one close by, considering joining an online group or check with your local hospital to see if they have a similar program.
   
   
2. Look Beyond Your Health Issues: Living with FM can be overwhelming. Take some time from your worries and challenges to participate in a faith-based activity or craft class, or to volunteer at a nearby school or nonprofit organization. Putting your thoughts and energy elsewhere helps to combat isolationism and a sense of worthlessness, and it’s a great way to meet others and shift your focus from your pain.
   
   
3. Take Advantage of Available Resources: A variety of programs are available to assist qualified individuals in various arenas, from preserving your credit to health insurance options for high-risk individuals. Below is a list of resources provided by the Patient Advocate Foundation. (For more information, visit http://www.patientadvocate.org/.)

INSURANCE

Appeals:
You may want to contact the Department of Labor (DOL) at http://www.dol.gov/ since this government agency has jurisdiction over self-funded employee benefit plans. You have the option to file a complaint with them or have them educate you on the rights you have as a member of a self-funded plan. You also may want to request a copy of your benefit plan language from the Plan Administrator of your benefit plan. Under the ERISA law, you have the right to review and receive a copy of the master contract between the administrator and the employer group. This document may be helpful in the appeals process as it contains more information included in the contract versus the employee benefit booklet which contains only basic benefit information. Under ERISA, the plan administrator has 30 days to respond to your written request for the document. The DOL enforces the law and will impose fines for non-compliance.

You may benefit from the publication "Your Guide to the Appeals Process.” This publication is available to download at http://www.patientadvocate.org/. It contains practical information about filing an appeal and includes sample letters you may find helpful. You need to know the reason for the denial to be able to base your appeal on proving why it should be paid. It is very beneficial to include any peer review or medical journal articles supporting this treatment as being the most effective.

Insurance/Uninsured Resources:

1. Group Health Benefits/COBRA: Determine if health coverage is available through your or your partner’s employment or through a COBRA plan if you have or your partner has recently left employment. http://www.dol.gov/ or 1-866-444-3272.
   
   
2. Medicaid: Apply for Medicaid through your county department of social services. Share of Cost or Spend Down programs may be offered to those who do not meet the income/asset guidelines requiring that a predetermined out-of-pocket cost be met or paid prior to Medicaid. Apply regardless; this is often a requirement to apply for the following programs. http://www.cms.hhs.gov/
   
   
3. County Medical Assistance: Apply for County Medical Assistance Program when denied Medicaid. This program is not available in every county; however, when available, the program is a coordinated system for the low-income, uninsured of the county of residence to access needed medical care on a sliding scale or no cost. Contact your local Medicaid office to learn more.
   
   
4. Risk Pool Coverage: Apply for Risk Pool Coverage which provides health insurance options for high-risk individuals. These are state programs that serve people who have pre-existing health conditions that often are denied or find it difficult to obtain affordable coverage in the private market. Contact your state commissioner or click here www.naschip.org/states_pools.htm to determine which states offer such coverage. Some states have a waiting period.
   
   
5. Hill-Burton Free Hospital Care: The Hill-Burton program was established in 1946, when Congress passed a law that gave many hospitals and other healthcare facilities federal funds to meet their construction and/or modernization needs. In return, these facilities are required to provide a specific amount of free or reduced cost healthcare. Visit http://www.hrsa.gov/ or call 1-800-638-0742.
   
   
6. Charity Care/Discounts: Discuss charity care, whether partial or full, with all facilities, doctors and hospitals involved. Self-pay discounts generally are available.

MEDICATION/CO-PAY ASSISTANCE

 
Drug costs:

• Understand and review your insurance plan 
• Seek out co-pay relief programs, discounted drugs, generic equivalents (when doctor approved); consider using mail order as a cost-saving measure or applying for indigent drug programs
• For those with Medicare part D, review your plan each year to ensure coverage has not changed or another plan doesn’t offer better coverage or more cost-effectiveness
• Apply for all available state and federal programs when financially qualified

Commonly used discount/free or co-pay programs:

Needy Meds	http://www.needymeds.org/
Rx Assist	www.rxassist.org/docs/medicare-and-paps.cfm
Partnership for Prescription Assistance	http://www.pparx.org/
Rx Aid	www.rxaid.us/index.html
Family Wize Savings Program (card that provides an average of 20% savings)	http://www.familywize.com/index.aspx

Discounted/$4 generic Medications available at:

Walmart	www.walmart.com/pharmacy
Target	http://www.target.com/
Kmart	http://www.kmart.com/
Walgreens	http://www.walgreens.com/

Patients should also contact local supermarket pharmacies for discount programs they may offer. Many are mirroring the large chains listed above.

  
Co-Pay Assistance Programs:

PAF’s  CoPay Relief (CPR)	http://www.copays.org/
HealthWell Foundation	http://www.healthwellfoundation.org/
Patient Access Network	http://www.patientaccessnetwork.org/
Chronic Disease Fund	http://www.cdfund.org/
Patient Services Incorporated	http://www.uneedpsi.org/

EMPLOYMENT ISSUES

Discrimination:
If you feel you have been discriminated against, file a complaint with the U.S. Equal Employment Opportunity Commission. This is the first step in the process. If they find that you were, in fact, discriminated against, they will issue you 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 the specific laws that exist in your state in regards to job discrimination. You may also consider contacting your State Attorney General for legal information. Please visit http://www.eeoc.gov/ for your local office contact information.

You may want to read "First My Illness, Now Job Discrimination." You can view or download the publication at http://www.patientadvocate.org/.

 
Family Medical Leave Act:
You may want to view the laws that apply to your situation at http://www.dol.gov/. Select "A-Z Index" and choose "FMLA.”  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 per year under the Family Medical Leave Act, without risk of losing your job, if you need to take time from work for the reasons specified under the law. 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 learn about COBRA on the same website.

DEBT CRISIS