The Interferon Archive
This is not a promotion for the interferons. INF– recombinant interferon-alpha — is an important therapeutic option for MPN patients. One of many. In the United States, interferon is only available to MPN patients off label, which frequently requires patients to jump through a few hoops. The Interferon Archive is designed to help support MPN patients secure prescriptions and obtain insurance coverage.
A frequent hurdle faced by MPN patients is to get insurance companies to foot the bill. Those who have been through this process — appealing a declined medical insurance claim — know the best approach is to supply a strongly documented support of interferon’s unique ability to relieve MPN symptoms and effect the underlying disease.
To make that process easier, we’re putting together the Interferon Archive. There are two parts to the archive: (1) Documentary evidence based on scientific papers published in peer-reviewed journals and (2) The stories of interferon patients. It is the sum of that narrative, the overwhelming evidence of renewed quality of life, reduction of splenomegaly and MRF-related fatigue, rebounding blood counts on which we can depend.
The current clinical trials
Eventually there will be proof through clinical trial and FDA approvals but that process is slow. Currently there is only one major MPN interferon clinical trial fully enrolled and accumulating data, Dr. Srdan Verstovsek’s Pegasys trial at MD Anderson.
There are three other trials in the works, the most promising of which is the large scale Danish trial of Dr. Thomas Larsen comparing INF with hydroxyurea but that too is only partially enrolled.
Dr. Ron Hoffman at Mt. Sinai, has two trials in process, one a comparative of Pegasys with HU, the other Pegasys with low dose aspirin. These are early stage efforts at the patient accrual level.
Dr. Richard Silver at Weill-Cornell has a prospective Phase II trial Phase of Pegylated Interferon Alpha-2b in Early Primary Myelofibrosis but he is not yet recruiting patients.
For contact information and details on these and other trials go to: http:// www. clinicaltrials.gov and type the trial number or other identifier in the search box.
NCT00452023: MD Anderson/Verstovsek. On-going, not recruiting., Pegasys in MPNs
NCT01259817: Mt Sinai/Hoffman. Recruiting. Pegasys vs aspirin in high risk PV/ET
NCT01259856: Mt Sinai/Hoffman. Recruiting. Pegasys vs. HU in PV/ET
NCT01387763: Denmark/Odense/Larsen. Still recruiting, some sites not yet recruiting. Low dose INF-alpha vs. HU
NCT01758588: Weill-Cornell/Silver. Not yet recruiting. Phase II, Pegasys in early MF
Meantime, available to us and our physicians beyond the clinical trial path are decades of deep experience in successfully using the interferons in MPN treatment (See “Open Letter to the US MPN Community“ by Dr. Hans Hasselbalch with extended comment by Dr. Richard Silver.)
There’s no reason to wait years for a judgment already rendered by great experience.
The Interferon Archives.
For now, we can rally our resources and provide all MPN patients for whom it is appropriate an easily accessible archive of documents and patient case studies to offer our physicians and insurance companies.
The Interferon Archive is an on-going and growing project. We are collecting stories from patients which we will post to the Archive and curating scientific papers to add to the Documents section.
If you are a patient taking interferon please consider sharing your experience. You can describe your interferon experience briefly in a few paragraphs or at length. Please include the name of your physicians, your diagnosis, your history of prior MPN drugs, your condition when you started interferon and your current condition.
Please submit your story to ourMPNforum@gmail.com. If you require anonymity, please indicate that clearly in your story submission. The Interferon Archive page will be continually updated and available at https://mpnforum.com/interferon-archive/ whenever you need it. Two key documents
Documentation for Pegasys Appeals Process, Dr. John Crispino MPN Research Foundation:
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