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Rheumatology Patients Hydroxychloroquine Access

The medication hydroxychloroquine (Plaquenil) has antiviral properties that have helped make it useful in treating malaria and stopping inflammation in autoimmune diseases like lupus, rheumatoid arthritis, Sjögren’s syndrome, and other conditions — as well as a potential therapy for COVID-19 complications, for which it is currently being studied. As research is underway the medication is being widely used experimentally for currently hospitalized COVID-19 patients. Unfortunately, this is leading to shortages for rheumatology patients who rely on taking this drug daily and indefinitely to prevent serious complications from their chronic conditions.

Manufacturers have pledged to increase supply, but patients are understandably stressed and anxious; some are even worried about life-threatening consequences of skipping or reducing doses for too long.

We asked patients to share their stories about their access to hydroxychloroquine and below is a sample of what we heard. You can share your story here.

‘Plaquenil Helps Me Be More Than My Lupus’

I have lupus and Sjögren’s syndrome and have been on Plaquenil for eight years. Prior to going on Plaquenil, my kidneys were not functioning correctly — along with many other issues — as a result of my lupus. Plaquenil calmed my flares and got me back to living a (mostly) regular life. I own my own business, I am a mom, I am a wife. Most people do not even know I have chronic illnesses and they certainly cannot tell it by looking at me. I am more than my lupus and Plaquenil helps me be that. With the Plaquenil shortage I am worried that I will not be able to maintain a continuous supply and my health will slide back to where it was prior to taking Plaquenil with kidney issues, hair falling out, fatigue, pain so bad it hurts to be touched, and so much more.

There needs to be a responsible rollout of Plaquenil as a COVID-19 treatment to ensure those of us already using it in a lifesaving way can continue our treatment and live fully productive lives. What compounds this issue even more is that stress can cause flare-ups. These are already stressful times. If those of us who take Plaquenil regularly cannot access it on top of the already existing stress of our current world environment, there will be many more flares from autoimmune patients. How will those patients in a flare receive adequate care in an already-stressed medical system? Keeping patients on Plaquenil is an easy and smart way to keep them out of the over-burdened health care system. — Beth

‘One Month’s Supply Would Cost $873’

I have Sjögren’s syndrome and was diagnosed about 15 years. I started taking generic Plaquenil and had been on the generic for about five years before being prescribed brand name. (I was given the brand name after having a reaction to the generic Plaquenil, in which I began to experience uncontrollable itching and skin discoloration.) I have been taking the brand name for three years after the reaction to the generic Plaquenil. I usually get a three-month supply, which in the past would cost me $140. Recently l attempted to get my prescription filled for a three-month supply and was advised I would need a prior authorization, which I have never had to do. My doctor did the prior authorization and we received approval. I then received notification from the pharmacy that 60 pills would cost me $873 — that’s for a one-month supply. I was astonished, asked why, and was advised that is the price set by pharmaceutical company. Needless to say, I didn’t get the refill. — Cassandra

‘I’m Having Flares and There Is Nothing I Can Do’

I was diagnosed with rheumatoid arthritis (RA) 18 years ago and have been taking hydroxychloroquine for the last 17 years, in addition to other drugs and biologics. Due to having severe RA, I have tried almost every drug that is available and am running out of options. Plaquenil along with sulfasalazine, meloxicam, and anakinra (Kineret) is a good combination that works well for me. I can no longer take methotrexate, leflunomide (Arava), Humira (or anything related) as I developed neurological symptoms and/or allergies. Now because of COVID-19, I can’t get a refill of Plaquenil because I have Kaiser [insurance]. I’ve spoken to my rheumatologist and there are no other drugs I can take in place of it. I’m having flares and there is little, if anything, I can do to stop them. — Sherrie

‘Discuss Other Options with Your Doctor’

I got a letter from my insurer saying that hydroxychloroquine may not be available and to discuss other options with my doctor. — Cindy

‘Last Time I Was Without It, I Couldn’t Walk’

I’m surely not the worst case of this shortage. But I’ve been depending on hydroxychloroquine twice a day for the past two and a half years to help keep my rheumatoid arthritis/psoriatic arthritis at bay, or at least better than without it. Last week I went to pick up my prescription and they told me that due to the shortage, they couldn’t give me more than a month at a time. Normally I’ve always been able to get three months at a time. Hopefully I can get more next month. I can’t imagine how bad it could be. Last time I was without it, I wasn’t able to walk, and could barely use my hands amongst other joints. At the same time if it can save lives of COVID-19 patients I want them to live. God be with us all through this time. — Earl

‘I Called and Was Already Too Late’

I have a Medicare drug plan and use the mail-order service to get a 90-day supply [of hydroxychloroquine]. I called last week anticipating a possible shortage and I was already too late. They said they were out and the manufacturer told them they could not provide a date when it would be available again. The pharmacy guy told me that usually means they won’t have it for a long time. — Beth

‘This Is Robbing Peter to Pay Paul’

I take hydroxychloroquine for lupus and antiphospholipid syndrome. I went to pick up my prescription this week at my local CVS and was told by the pharmacist, there is none left to give; it is now on backorder due to the COVID-19 pandemic. Calling around to various national chain pharmacies in my area revealed more of the same. There is none left in stock. This is highly concerning since this drug protects me from blood clots related to antiphospholipid syndrome and organ damage related to lupus. Prior to taking this medication I was very sick. After having been on it for six months, it has made a huge difference in my health. I no longer suffer with the horribly debilitating symptoms associated with lupus and my blood labs are so much improved with respect to antiphospholipid antibodies.

This drug controls my disease and without it, I am very worried that I will suffer a major setback. By the nature of lupus, our immune systems are already compromised; we are part of the high-risk population they keep talking about that needs the added level of protection when it comes to COVID-19 mortality and morbidity. Removing hydroxychloroquine from the arsenal of drugs used to fight lupus is nothing more than robbing Peter to pay Paul.

Lupus patients are a significant portion of the patient population with a serious underlying medical condition with a high potential for COVID-19 complications. Doctors will rush to try and save our lives, put us on ventilators and pump us up with hydroxychloroquine, the “new wonder drug.”

There is so much irony in that when hydroxychloroquine is the very drug lupus patients are currently being denied in this health care crisis. I would hope in the very near term that cooler minds will prevail and this travesty of redistribution of hydroxychloroquine will be closely examined.  If only the media could stop proclaiming this drug as the “wonder cure” for all, without taking into account the harm they are doing across the board to the millions in this country who are reliant on hydroxychloroquine each and every day to keep them well and out of the hospital.

I am sure the masses will not understand the risks to the patients in this country with lupus and that is understandable, but the CDC, FDA, and other government bodies are in the position to understand and they should act now. — Mary

‘I Should Be Taking My Medication as Prescribed by My Rheumatologist’

My pharmacy has limited hydroxychloroquine prescription refills to only 14 pills a month. My prescription is for two pills a day, so I only have a week’s supply of medication for a month’s time. I tried to explain this to the pharmacist, but she told me it’s OK to take it less than prescribed. I thought that was way out of her remit to be advocating that advice to patients. She’s not a rheumatologist and didn’t prescribe the medication. I should be taking my medication as prescribed by my rheumatologist. A pharmacist should not be dictating this or even have an opinion about it. How can a pharmacy decide who gets a prescription filled and who doesn’t? If your doctor prescribes a medication for you, it should be filled as prescribed.  It shouldn’t matter how long you’ve had that prescription or if you’re new to taking the medication. If you have an autoimmune disease and your rheumatologist prescribed the medication to you, then she obviously thinks you should take it. — Anonymous

‘My Options for Alternative Meds Are Limited’

I called my pharmacy this morning to inquire about the supply of hydroxychloroquine. My 180-day prescription is due for a refill next month and I wanted to get an idea of how supplies were holding up. My pharmacist advised that all of her suppliers had informed her that they were “completely out” of hydroxychloroquine, and she said her shelf at the store was nearly empty. I am unable to take methotrexate because I am prescribed a number of anti-epileptic medications for seizure disorder. My options for alternative treatments are limited, though I do take etanercept (Enbrel). I plan to speak with my doctor to see where we go from here, but I am well aware that my current medications severely limit my options. — Johana

‘Plaquenil Has Been a Life-Changer for Me’

I have been on Plaquenil for 10 years, since I was first diagnosed with rheumatoid arthritis. It has been a life-changer for me. Before taking it, I had challenges dressing myself, washing my hair, cooking, and simply feeding myself. I suffered from chronic pain that was debilitating. I recently tried to get a three-month supply of my Plaquenil that I take twice a day and it was substituted with a generic brand. In the past, the generic brand did not work for me. I’m hoping that people with autoimmune disease like me will not have to suffer due to a supply shortage. — Val

‘The Look on My Doctor’s Face Could Have Broken the Heart of Satan’

I have lupus and severe rheumatoid arthritis (RA). I’ve been taking Plaquenil for my lupus for almost 18 years. When President Trump made the announcement a few weeks ago about using Plaquenil for COVID-19, I immediately called my pharmacy to check on my refill and was told that it was already on back order. It was 9 AM PST, the same day as his announcement. I immediately drove to my rheumatologist’s office, without an appointment, and was able to speak to him about it. He had just found out about the shortage. The look of heartbreak on his face could have broken the heart of Satan himself.

COVID-19 patients are now first priority, meaning they will get it first when shipments do come in or more is manufactured. In the meantime, people like me, whose life LITERALLY depends on it and have used it since their diagnosis of a lifelong life-threatening chronic painful disease that fights against their body every day have no access to it.

This medicine keeps my lupus from flaring up. I have SLE: systemic lupus erythematosus. Not only does it affect my joints and musculoskeletal system, but also my internal organs. I’ve been hospitalized so many times for lupus-related issues that the staff knows me by name or “The Girl with Lupus.” I’m now rationing what I have. I normally take 400 mg of Plaquenil a day, but since this started, I’ve been taking 100 mg because I’ve been told to my face there is no projected date of availability for lupus or RA patients.

My body is feeling it. A lot. I’m a single mom with a 15-year-old daughter who has type 1 diabetes. She is on an insulin pump and is allergic to all long-lasting insulin. I need to be alive to take care of her. But knowing that I can’t get my medicine that helps me fight MY OWN BODY to stay alive in general, terrifies my soul. Because as a mother, NOTHING stands in the way of me taking care of her.

Except this.

This isn’t some medicine that people should just try to see if it’s gonna be good or not, as some people have announced to the media outlets. And the type of diseases that it helps with aren’t just mild cases, as it has also been previously stated by those same people. This medicine keeps people like me ALIVE. Please help get the word out. I’m clinging to my faith in these times of uncertainty and I’m thankful that the Lord has always been faithful. I’m trusting He will see me through this, too. — Aimee

‘I Called 7 Pharmacies and All of Them Are Out’

I was diagnosed with lupus and Sjögren’s disease in 2016. I have been on Plaquenil since I was first diagnosed. After President Trump started promoting the use of Plaquenil as a cure for the coronavirus I have been unable to get Plaquenil. The pharmacy I have been using for years told me they had to save some for coronavirus patients. My pharmacy asked me to call around to local pharmacies to see if they have any Plaquenil; if they did, they would send my prescription over to them and have them fill it. I called seven local pharmacies and all of them stated they were out of Plaquenil. The fear sets in because I live in New York and the virus is running rampant here. Without the Plaquenil, will my immune system have trouble fighting the virus? I’m a cancer patient as well. What do we do? We end up dying because our body won’t be able to stand a fighting chance. — Kelly

‘I Reduced My Dosage on My Own’

I have been living with lupus for the last 12 years and have been taking 80 mg hydroxychloroquine daily.  At my last office visit, my doctor reduced the dosage to 40 mg daily so the last container of pills would last twice as long. Well, now I’m running low and I tried to refill the prescription, but the pharmacist said there is no hydroxychloroquine available. On my own I reduced the dosage to 40 mg every other day. I don’t know if this is acceptable or not. I know that others need the drug to combat the virus, but we lupus patients need it too. — Rod

‘I Feel Guilty Complaining’

I have been taking Plaquenil for two years for progressive rheumatoid arthritis. I have been unable to have the medicine refilled for three weeks. The big chain pharmacies as well as the mom-and-pop drugstores all say they have no idea when they the medicine will be available again. I have begun to experience flares in my wrists as a result of not having the meds. My anxiety level is increasing with each passing day because I cannot afford (physically or financially) to have another major flare. With everything going on with COVID-19 and this medicine being a possible antidote and saving lives, I feel so guilty complaining that I can’t get the medicine. But I need it, sooner than later! Thank you! God bless our country, health care workers and all first responders. — Tammy

‘My Husband Is Not in Great Health to Begin With’

My husband ordered his refill of hydroxychloroquine along with other medications on March 15 from Kaiser mail order. He received some of his medications and needed to call our local Kaiser pharmacy to reorder the meds that they had not sent through the mail. The pharmacy told him they would be ready in a few days on Wednesday, March 25. He got a text message from Kaiser saying his prescriptions were ready for pick up. I went to pick them up on Friday, March 27 and two of his medications were not ready — one was hydroxychloroquine. The pharmacy told me they would be ready on Tuesday, March 31. Then we got a call and an email telling him he would not be getting his hydroxychloroquine because of COVID-19. My husband was instructed to call the department to schedule a phone appointment. The only available appointment was April 15. My husband is 69 and has been on hydroxychloroquine for 12 years and has not had a flare-up since. He has RA, atrial fibrillation, COPD, and asbestosis from asbestos exposure. He was in the hospital in February with the influenza A with extremely low oxygen levels. Obviously, he is not in great health and it would be tragic if he needed to suffer from flare-ups. He would not be able to walk, use his hands, etc. My husband is scared of getting COVID-19 and then on top of it he is being denied his medication. — Elizabeth

‘We’ve Been Left to Die’

I’ve been trying to obtain my newest refill of Plaquenil for three weeks from Kaiser. I live an hour from Mexico and attempted to fill my script with a pharmacy in Mexico. I called ahead of time and they told me that no pharmacy in the world is selling Plaquenil right now. I have not taken my Plaquenil in over four weeks. I am concerned about what will happen the longer I go without my Plaquenil. I’m working very hard to eat well and take all my vitamins to hopefully stay healthy. Avoiding all foods that cause inflammation and trying my best to be stress-free but finding that impossible in these current times. I feel like we’ve been left to die. — Deanna

‘I Hope Nothing Too Bad Happens’

I was denied a refill for hydroxychloroquine by Kaiser in Sacramento, California with no word on when a refill might even be considered. I have mixed connective tissue disease (MCTD). My particular version involves joints, lungs, and skin rashes. My doctor told me to just take NSAIDs for now unless I have a flare-up. I don’t know what will happen then, as it is even with medication I always have a rash somewhere and I just had a knee replacement last month. I hope nothing too bad happens. — Karen

‘Lupus Patients Will Be Allowed to Die’

I was diagnosed with lupus (SLE) over a decade ago and my rheumatologist prescribed the brand name drug Plaquenil for me.  I have been taking it throughout my illness in order to prevent flares and possible attacks on vital organs. According to my pharmacist I have just filled my final prescription for Plaquenil (30-day supply) because he states he no longer has access to additional supplies of Plaquenil. I am very concerned that this could result in a flare of lupus and possible attack of vital organ(s). I’m seeing reports of physicians and dentists writing prescriptions for hydroxychloroquine for their families and friends so they can hoard just in case they become infected with COVID-19 and just in case the drug may be effective for it. I find it appalling that the President and Congress did not ensure that BOTH lupus patients as well as diagnosed COVID-19 patients are not assured of having access to this possibly lifesaving drug.  Effectively what the government and medical community has decided is the lupus patients will be allowed to die from lack of their medication while COVID-19 patients will live IF the drug is effective for them. — Patricia

‘I Have a 2-Year-Old and I’m Scared That I Will Flare’

I’m from Australia and for the last few weeks I have had trouble getting hydroxychloroquine. The chemists have told me it is temporarily unavailable and there’s a worldwide shortage of the drug. I asked them when will it be available? They said they don’t know, that there’s no timeframe for this. I am scared for my life. I have a 2-year-old son and I’m scared that I will flare without this medication. It has helped me stay in remission for almost four years. When I flare, my lupus attacks my skin, joints, and blood. My last flare was a medical emergency. My platelet levels dropped, I was very, sick, and I had sepsis along with this. I really don’t want this to happen again. I want to be able to receive my medications normally. I am only 26 and I don’t want to die. This is horrible what is happening to us sufferers. No one is helping us. — Nikita

‘Days of Vague Answers’

My Plaquenil prescription was supposed to be filled by mail order on March 21. After days of vague answers as to reasons for the delay, such as verifying details with doctor, my prescription was canceled this morning (March 26, 2020). I called and was told both brand and generic were backordered. I have been on this medication since 2005. — Mark

‘This Is Putting Me at Risk’

I live in the UK and have been told by several pharmacies that hydroxychloroquine is not in stock and cannot be ordered from the manufacturers. This is going to put me at risk, as I cannot take a medication I have been taking for years to help my lifestyle and health. I’m really concerned about this. — Sharan

‘The Lives of Lupus Patients Matter’

I am a lupus patient diagnosed in March 2014. Along with lupus, I have several other severe autoimmune diseases that I battle daily. Originally my lupus affected my heart and my kidneys. It later began to affect my lungs. I’ve been taking hydroxychloroquine since the onset of my illness. It has its pros and cons, however, after carefully going over my treatment plan and discussing my options with my lupus team, I know without a doubt I’d die if I stopped taking it. This shortage of the lifesaving medication that I’ll soon be deprived of is going to be devastating to my health. If you could please reconsider depriving lupus patients of their right to have a quality of life, you’d save many lives. The lives of lupus patients matter just as the lives of COVID-19 patients. None of us asked for these diseases; it was God’s plan. In saying that, I don’t think that God’s plan was to deprive one group of people of the quality of a healthy life so that another could live. Perhaps you should meet with a few lupus patients so that you could see the daily struggles that we endure, before making such a detrimental decision that could have a devastating impact on our world as a whole.  Who gives you the right to choose who lives or who dies????? What if it was YOUR family battling this disease!!!!!! — Tabitha

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