As information changes about COVID-19, the Pulmonary Hypertension Association (PHA) continues to add resources related to pulmonary hypertension (PH) and treatment access. Here is what PHA learned this week about access to distilled water, the chloroquine and hydroxychloroquine drug shortage for PH patients with lupus, and COVID-19 financial assistance funds. See our related treatment-access content here.
Cleaning medical devices without distilled water
Some PH patients have expressed concern about running out of distilled water to clean medication-delivery devices. There doesn’t seem to be a significant distilled water shortage at this time, but here’s what PAH therapy manufactures say about this topic:
- The i-Neb user guide states: “Rinse the washing basket containing the parts in soft, distilled or filtered water. If you have hard water, rinse with water that has been boiled and allowed to cool. Shake off excess water and leave parts to air dry.”
- United Therapeutics provided this statement about cleaning the Tyvaso Inhalation System. “United Therapeutics Corp. cannot recommend the use of tap, sterile or purified water with the Tyvaso Inhalation System. Water with impurities may cause precipitate formation within the inhalation device than can interfere with device performance. The one-time, emergent use of tap, sterile or purified water (if distilled water is not available) would likely not present an immediate problem and should absolutely be chosen in lieu of a patient missing a dose of treprostinil. However, output performance of the inhalation device will only be optimally preserved with the use of distilled water. If tap, sterile or purified water is used in the inhalation device, end-of-day cleaning should also incorporate cleaning of the interior of the inhalation chamber, including the disc in the bottom of the device.”
Hydroxychloroquine or chloroquine
Hydroxychloroquine and chloroquine – prescription drugs used to treat lupus and rheumatoid arthritis – recently were added to the Food and Drug Administration (FDA)’s drug shortage list. PHA is closely watching the shortage because of the co-occurrence of lupus and pulmonary hypertension in some people.
Demand for these medications has increased because of public perception that they could influence the course of COVID-19. Please note: At this time, neither drug is FDA-approved to prevent or treat COVID-19. The drugs have significant side effects, including possible breathing and heart rate issues.
There is no unified national approach for dispensing hydroxychloroquine and chloroquine. Some states have limited how much can be dispensed to one person. The limits may or may not be diagnosis-specific.
The Lupus Foundation of America (LFA) has several resources to help patients obtain medication refills. LFA advises people with lupus to start their refill process early and ask their prescribers to note their diagnosis on the prescription.
Additional LFA resources include:
- Tips for refilling your hydroxychloroquine (Plaquenil) prescription.
- State-by-state information on hydroxychloroquine access.
- Interview with LFA’s Director of Government Relations about hydroxychloroquine access.
PAN Foundation COVID-19 Treatment and Prevention Fund
The PAN Foundation is providing direct assistance to people with rare or chronic health conditions who are covered by Medicare. The $300 prepaid debit cards are for those diagnosed with COVID-19 or people directed to self-quarantine due to COVID-19 by a medical professional or government agency. Learn more about eligibility. Apply by calling 866-316-7263 Monday-Friday, 9 a.m. to 7 p.m. EDT.
NORD COVID-19 financial assistance
The National Organization for Rare Disorders now offers assistance for medical and non-medical COVID-related expenses. Applicants must have a rare disease; have lived in the U.S. for at least six months; and meet financial eligibility criteria. To apply, call 203-242-0497 or email NORD. See below about what the programs cover.
NORD COVID-19 Critical Relief Program offers financial assistance for non-medical, essential expenses, such as:
- Unexpected utility expenses.
- Communication expenses (phone, cell phone, internet).
- Emergency repairs to car, furnace, home or major appliances.
- Assistance with travel and/or lodging logistics and expenses.
- Rent or mortgage payment assistance.
- Support for adaptive learning during school closures.
COVID-19 Rare Disease Premium and Medical Assistance Program offers financial support for out-of-pocket medical expenses for eligible uninsured and under-insured patients whose insurance companies declined coverage. Those costs include:
- Medical visits and telehealth consults.
- Laboratory and diagnostic testing.
- Physical and/or occupational therapy and/or other physician-prescribed therapy.
- Durable medical equipment.
- Medical supplies (tube feeding supplies, dressing kits, personal protective equipment).
Get more information about COVID-19 and PH therapy access.