We all know that living with a rare disorder has its challenges. Many of them are physical or emotional, but there can also be significant financial challenges.
The current, basic standard of care for patients with XLH consists of two prescriptions, one for phosphorus supplements and one for calcitriol/Rocaltrol. In some cases, where hyperparathyroidism develops, a third medication, cinacalcet, may be prescribed. Access to all three of these prescriptions can be problematic.
In some countries, some or all of these medications may be unavailable. (Please let us know in the comments if you cannot get phosphorus supplements or calcitriol in your country. We'd like to have better information on this issue.) In the U.S., these items are available, but may be cost-prohibitive, since not all insurance companies offer coverage for these prescriptions. It's not uncommon for insurance companies to deny coverage for phosphorus, arguing it's a "mineral supplement, not a drug." Similarly, they will assert (inaccurately) that calcitriol/Rocaltrol is a vitamin, not a drug. And finally, since cinacalcet is often assigned to the top tier of drugs (meaning it's particularly expensive), insurers will likely require step theory or recommend surgery to remove the parathyroids (even when not recommended by the treating physician) before approving coverage.
If you are a member of the Network (it's free to join at forum.xlhnetwork.org), you can download a sample letter, drafted by our Scientific Advisory Board member, Michael Econs, MD, to share with your doctor to appeal the denial of coverage for calcitriol, explaining that it is not a vitamin, but a hormone that we cannot metabolize on our own.
But that still leaves gaps in your access to treatment. What other options might you have?
There are several patient assistance programs in the U.S. (and we'd love to hear from XLHers around the world who might have other solutions for their own locations) that, in theory, can help improve access.
The programs fall into three groups. The first offers reasonably priced prescriptions to those without health insurance. The second consists of nonprofit organizations who offer help with copayments for those who have insurance coverage. The third consists of the pharmaceutical companies that manufacture/distribute individual treatments and provide assistance to those who cannot otherwise afford the treatment.
To help find an assistance program, NeedyMeds.org and the Partnership for Prescription Assistance www.pparx.org and RXAssist.org offer search engines. You key in the name of your treatment, and it will link you to any relevant programs.
For more general information on patient assistance programs, check out this article at WebMED: http://www.webmd.com/healthy-aging/patient-assistance-programs-for-prescription-drugs
Please note that The XLH Network, Inc. does not have any affiliation with any of the above organizations, and does not endorse any of the programs. The information here is merely a starting point for further investigation by individual patients/caregivers.