Fabry disease

Treatment

I have Fabry disease; are home infusions right for me?

The following content is sponsored by Diplomat.

Home infusions can be a convenient option for many patients living with Fabry disease and receiving enzyme replacement therapy (ERT). When starting ERT, most doctors prefer that patients begin infusions in a hospital or outpatient infusion center. After a period of time - determined by the ordering doctor (usually three to six months) - patients may have the option to transition to home infusions. Patients might be a candidate for home infusion if:

  1. They are stable patients who are not having active infusion-associated reactions (often called IARs).
  2. They have a safe home environment for the infusions.
  3. They have coverage for home infusions and medications through insurance or a patient-assistance program.

If a doctor has decided that a patient is a candidate for home infusions, the next step is working with the drug manufacturer's patient-service programs and case managers or infusion pharmacies such as Diplomat Specialty Infusion Group that provide case management. These specialized teams will investigate home-health nursing options to find one that accepts the patient's insurance, is experienced in ERT, and fits their schedule. Most insurance companies allow home infusion therapy as an alternative to a hospital outpatient infusion center, and these experts will make sure home infusion will work with your insurance plan.

Guest JF, Jenssen T, Houge G, Aaseboe W, Tøndel C, Svarstad E. Modelling the resource implications of managing adults with Fabry disease in Norway favours home infusion. Eur J Clin Invest. 2010 Dec;40(12):1104-12. doi: 10.1111/j.1365-2362.2010.02363.x. Epub 2010 Sep 9. PMID: 21070219 https://www.ncbi.nlm.nih.gov/pubmed/21070219

Smid BE, Hoogendijk SL, Wijburg FA, Hollak CE, Linthorst GE. A revised home treatment algorithm for Fabry disease: influence of antibody formation. Mol Genet Metab. 2013 Feb;108(2):132-7. doi: 10.1016/j.ymgme.2012.12.005. Epub 2012 Dec 28.PMID: 23332169 https://www.ncbi.nlm.nih.gov/pubmed/23332169

Kisinovsky I, Cáceres G, Coronel C, Reisin R. Home infusion program for Fabry disease: experience with agalsidase alfa in Argentina. Medicina (B Aires). 2013;73(1):31-4. PMID: 23335703 http://www.medicinabuenosaires.com/PMID/23335703.pdf

Beck M, Gaedeke J, Martus P, Karabul N, Rolfs A. [Home-based infusion therapy--a feasible approach for chronically ill patients? A new path to provide superior patient care exemplified for Fabry's disease]. Dtsch Med Wochenschr. 2013 Nov;138(46):2345-50. doi: 10.1055/s-0033-1349624. Epub 2013 Nov 5. German. PMID: 24193859 https://www.ncbi.nlm.nih.gov/pubmed/24193859

Milligan A, Hughes D, Goodwin S, Richfield L, Mehta A. Intravenous enzyme replacement therapy: better in home or hospital? Br J Nurs. 2006 Mar 23-Apr 12;15(6):330-3. PMID: 16628169 https://www.ncbi.nlm.nih.gov/pubmed/16628169?report=abstract

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