Staying abreast of your health insurance, policy coverage details, and new regulations can feel like a fulltime effort. State-by-state insurance regulations vary widely, and new legislation seems to come at a frequent pace. Factor this by deductibles and lifetime maximum caps, and it's not surprising that families living with hemophilia often need extra guidance to cope.

Insurance problems sometimes arise when:

• A job change involves switching insurance carriers
  
• The loss of a job creates a loss in healthcare coverage or a dramatic increase in the cost of premiums
  
• College-age children graduate and are no longer eligible for dependent coverage on their parent's health plans
  
• High deductibles create financial problems, or lifetime maximum benefit caps are reached

If your family is facing a pending lapse in coverage, here are some places to turn to for help:

• Consult your local Hemophilia Treatment Center (HTC). It has knowledgeable professionals to help navigate your insurance policy and benefit statements. Some can even provide emergency financial aid.¹
  
• Contact your local National Hemophilia Foundation chapter. A social worker or financial reimbursement specialist may be able to offer help.²
  
• Apply to your factor manufacturer for assistance. For example, Bayer Factor Solutions Program is designed to help patients continue treatment with Kogenate FS during a lapse in private health insurance coverage. To learn more, go to http://kogenatefs.com/patients_B-KGFS.cfm
  
• Find your state's Children's Health Insurance Program (SCHIP). This federally mandated state program helps provide insurance to low income families who cannot afford private health insurance but have incomes too high to qualify for Medicaid.³
  
• Find a free healthcare clinic. The U.S. Department of Health and Human Services offers free clinics that will provide medical care, even if you have no insurance. To find a clinic near you, go to: http://ask.hrsa.gov/pc/⁴
  
• Learn your rights and how to advocate for them. The 2007 edition of Health Insurance Resources: A Guide for People with Chronic Disease and Disability is an updated reference manual for understanding the health care system and maximizing your patient rights within the system.⁵

If insurance coverage is causing you problems, consider becoming an advocate for positive change. Many people in the hemophilia community are actively working to affect change in the health insurance field. NHF tracks some of these efforts by posting legislative updates on their Web site.⁶