Navigating insurance

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    Kris……disgusting, but I have heard of many such stories. In fact, I attended a conference (wont name it either) where investors as well as all other stakeholders gathered. As we know, biotech and Pharma. Industry are business driven by investors, stocks, etc.
    This particular investor asked to meet with me regarding a company focusing on something (sorry, I have to be discreet) benefitting CC patients. Long story short, he found a loophole in the Obama Law in where he thought to entice people to bet on their own health outcome. This in turn would generate enough money to support the company he was interested in.
    I was shocked and disgusted and hastily ended our meeting by inviting him to read our discussion board. It would enlighten him with the knowledge of what people endure in order to beat a disease.
    Amazing what people will do to benefit from the ill health of others!


    And I always say the squeaky wheel gets greased. If you get denied, appeal and appeal again. Also you can try contacting your states Insurance Commissioner.

    Just as a little note about referrals, especially out-of-network….I know one insurance company (that shall remain un-named) has a pool of money that they use for their out-of-network referrals. This is a set sum of money every year that they use. The key is that the insurance case managers (those whom make the decisions about out of network referrals) get to split any money that is left over at the end of the year. This is their bonus for limiting out of network referrals….Hmm, I think there might be a little conflict of interest there with that.



    Thank you Linda. I missed this webinar so your information is very helpful.
    All the best,


    Linda….thank you for attending these important webconferences on behalf of the patient/caregiver community. Navigating this disease is difficult enough without the added stress of insurance issues.
    Thanks again,


    On June 18, 2014, I attended a webinar on “Navigating Insurance” hosted by Global Genes. The panelists were Julie Raskin of Congenital Hyperinsulinism International, Stephanie Bozarth of the National MPS Society, and Pam King of Global Patient Strategies. The following is a brief summary of information provided by the panelists.
    Health care costs continue to increase and insurers are taking actions to contain costs, including decreasing the number of providers in their network, eliminating certain drugs from the list of medications covered by insurance, and limiting the amount of medication covered by insurance. These actions are of particular concern to patients with rare diseases since there may be only a limited number of doctors with expertise in the disease and treatment options may be limited.
    If you encounter difficulties with your insurer, you (or your caregiver/family member) must be assertive and be prepared to advocate on your behalf. Here are a few tips:
    – Form a good relationship with your doctor and his/her staff. If your doctor thinks it is important for you to see a doctor who is not in your network, he or she can write a letter of medical necessity explaining why treatment outside the network is essential
    – Your doctor can also write a letter of medical necessity requesting use of a medication or treatment not covered by your insurer, including “off label” use of a medication.
    – Obtain information from the organization that advocates for your disease.
    – Call your insurance company and be polite but persistent. Try to reach someone in a decision making position such as a case manager or medical director.
    – If your insurance is provided by an employer, consult with the employer’s human resources department.
    – If you are having difficulty getting approval for a drug, try contacting the pharmaceutical company that manufactures the drug; some companies provide patient advocates.
    – If your request is denied, obtain information about the insurer’s appeals process and file a formal appeal. Include as much supporting information as you can.
    – If other avenues fail, consider soliciting support from elected officials or the media.
    – If you are unsuccessful in your attempts to obtain approval for an out-of-network provider, try to negotiate a self-pay rate with the provider in order to reduce your costs. If your request for a particular drug has been denied, contact the pharmaceutical company that manufactures the drug to see if they can help you with costs.

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