Dear Community Members,

First of all, I would like to thank you all for the precious information you have on this forum. I have gone throught the diferentes threads and it has been of unique value to me. I hope I can start being helpful to the community soon. 

I am a 46 year old female. Very healthy life. I live in Madrid (Spain). I started feeling bad last october (2020) and have been hospitilized for several months. I was diagnosed by some wonderful doctors on February 2021. I started IVIG on April on a public hospital. My life has improved a lot and I am very happy and grateful. Today I have had my fourth session.

I am worried since my doctors have informed me that there is a world shortgage of IVIG and they will be probably stopping the treatment for some months, not knowing when they will be starting. They told me it happens very often. Can anyone give me some advice on this issue? Are you experiencing this problem? Is it very common?  Do you know if there other alternatives?

Thanks in advance and my best wishes to you all.

 

Where I get my infusions, I get priority for getting IVIG because I'll die if my treatment is delayed. Other people with non-life threatening conditions have their infusions delayed. I've been told that I'm always " at the front of the line".  I get 125 grams every other Friday. The last time my infusion was delayed because of a holiday, I ended up in the hospital, so my advice would be to avoid any delays in getting your treatment.

AMJ,

Welcome to our community!  Please supplement your profile statement (at https://rareshare.org/profiles/amj) to include as much information as possible about your path to a diagnosis of SCLS, because we are still learning from one another.

With regard to the availability of Immunoglobulins for intravenous administration (IVIG), it has always been scarce and thus expensive, because it is a natural blood product and it takes blood from hundreds of donors to harvest enough immunoglobulins to satisfy one SCLS patient's monthly need -- how many depends on the dosage given.

Any chronic shortages that occur are man-made and the result of rationing of funds to buy IVIG. For example, especially in public hospitals, or in countries where medical care is in the hands of a state-run entity, infusion facilities are often allocated a certain amount of budgeted funds with which to purchase medications for the year, so they often don't have the latest and most expensive ones available (because they are not given funds to buy them) -- the latest cancer-fighting medications, for example -- or else they periodically run out of them (because they must wait until given extra funds to buy more).

In sum, there has never been anything but a temporary worldwide shortage of IVIG -- like there has never been anything but a temporary, worldwide shortage of diamonds: those willing to pay the market price can always buy IVIG -- or diamonds.  Therefore, patients with private medical insurance, once approved, usually encounter few if any shortages -- because private insurers usually don't lose money, raising or lowering premiums as needed, whereas government-run medical systems never charge what services and medications really cost, so they always lose money and are dependent on budgetary contributions.  In wealthier countries, governments have more money to spend on healthcare; in poorer countries, governments have less.

For example, in the United States there is an association of (private) pharmacists and they routinely publish information on temporary drug shortages. As you will see, as of this week (July 7), they report that a particular brand of Immunoglobulins, Gammagard for subcutaneous rather than intravenous use, is in short supply.  However, there is availability of many other brands of Immunoglobulins available for subcutaneous use, check out https://www.ashp.org/Drug-Shortages/Current-Shortages/Drug-Shortage-Detail.aspx?id=527 

What we often see in Europe and other countries with state-run medical systems that are budget-constrained is SCLS patients receiving reduced doses of IVIG, mainly one gr/kg twice monthly rather than two gr/kg twice monthly.  For example, a patient that weighs 70 kg will receive 70, rather than 140, gr of IVIG per month.  Sometimes that is enough to prevent new episodes, sometimes it is not.

Arturo

AMJ and All,

At my infusion appointment yesterday, my nurse volunteered out of nowhere that there was a world-wide shortage of IVIG. She thought it had to do with the pandemic and people being unable to donate blood and plasma the way they used to. I was curious about the shelf life of IVIG so I went online. I found this article which confirmed my nurse's theory. In January here in the US, the FDA extended the shelf life of at least one subcutaneous IG brand, which has made the US supply "a little more secure." https://www.fiercepharma.com/manufacturing/octapharma-snares-shelf-life-extension-for-pi-drug-as-immunoglobulin-supply-concerns

This shortage seems different from other shortages. First, demand has increased in the past several years. Second, the pandemic has affected donations and production. Given it takes 7-12 months to produce IVIG, I would think we're just beginning to see the effects of the supply chain problem. It could get a little worse before it gets better. Hang in there and good luck.

Jen

I have asked about this and apparently there is no shortage in the NHS (Britian health service) although they are managing supplies carefully.

Dear amj,

Our son ihas been on ivig for nine years here in the Rias Baixas. Once they changed the brand because of shortage, but right now there is no shortage.  He is receiving his "chute" every month as usual. The problem nay have to do with the Comundad de Madrid. 

Saxamonde 

Dear Community Members,

Thank you very much for your prompt responses. The information has been very useful. I will let you know if I have been able to receive the treatment in august. Otherwise, I will start to search for alternatives.

Dear Arturo,

I have update my profile. In case, you think it might be useful to other patients or to the medical community, I could share detailed medical information with you. 

My dose is 2gr/kg every four weeks.

Dear Saxamonde,

Do you think we could get in touch via email so I could get more detailed information to consider moving to another Comunidad? My email is amj@protonmail.com

I apologize to you all for the delay in the response.

Kind regards