For anyone with a deadly
allergy
to
bees
or
peanuts
, the
EpiPen
has been the emergency, go-to treatment. It's a portable device that can be carried in a purse or backpack and used quickly to auto-inject the drug
epinephrine
, which treats anaphylactic reactions.
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But according to
NBC News
, the pharmaceutical company has been gradually raising the price of a two-pen set, from $100 in 2008 to $220 a couple of years later to $600 by 2016. Thanks to higher deductibles and other changes in insurance coverage, some families pay more than $1,000 for the treatments.
Now, self-proclaimed pharma-hackers Michael Laufer and his team Four Thieves Vinegar Collective have figured out to make their own epinephrine auto-injector,
IEEE reports
. A 6-minute video on YouTube, lays out the steps for making a so-called EpiPencil for a cost of just $30.
All of the components, from the spring-loaded injector to the syringe, is available over-the-counter. The only thing that's not available is the drug -- for which you need a prescription.
But Laufer, who is working on a machine would that allow people to make their own medicine, told IEEE Spectrum that acquiring the drug online from a chemical supplier was easy.
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"There's a small but hopefully growing subculture of people who are buying the active ingredients of drugs," he says. "It's encouraging to see people take control of their own health."
It's unclear how Laufer's machine, called the Apothecary Microlab, which he showed at the 11th
Hope
hacker conference in July, would be legal, since all drugs must pass FDA approval.
But according to IEEE, the version he showed makes an inexpensive batch of the drug
pyrimethamine
, which is used to treat HIV patients. It's the same drug, in fact, that used to sell for $13 per dose until
Martin Shkreli, CEO of Turing Pharmaceuticals
, got a hold of the patent. Now it goes for $750.
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Sticking it to big pharma could make Laufer look like a caped crusader, something of a Captain Chemical, if you will. After all, he wants to develop drugs to treat HIV and hepatitis C as well as create a "plan B" contraception pill.
But mixing up pharmaceuticals in one's garage/basement/kitchen raises all kinds of eyebrows and even if a person is willing to ingest a drug he or she made, would they feel comfortable giving it to someone else?
Jennifer Miller
, a professor of medical ethics at NYU told IEEE, "If your child is having a life-threatening allergic reaction, you want to make sure they get the right medicine, at the right time, at the right dose." A regulated device will do that.
SEE PHOTOS: 10 Most Expensive Drugs in the World
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Drugs prices have been drawing attention recently following the decisions by various pharmaceutical companies to spike the cost of various medications several times their original price overnight.
Pharmaceutical companies have the upper hand in drug prices, because patients often have no recourse beyond their medication. But even with the high costs of some treatments, they can be a value compared with the long-term physical and financial burden of the illness itself, finds a study by University of California - San Francisco researchers.
Hepatitis C is a disease that can lead to liver cancer, transplants, cirrhosis and more, but that damage is preventable if treated early. Harvoni cures hepatitis C, but at a cost of $100,000 for the full course of treatment. Insurance companies typically only cover the cost of the treatment in the later stages of the disease, a practice that isn't as cost-effective, the researchers found.
More than 3 million people in the United States have hepatitis C, most of whom were infected from tainted blood transfusions received before 1992. Most new infections are the result of intravenous drug use.
Although $100,000 is no small sum, Harvoni doesn't rank among the most expensive drugs on the market today, many of which are meant to treat a much smaller pool of patients.
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Made by Regeneron Pharmaceuticals, Arcalyst is a treatment costing a quarter million dollars annually for patients suffering from Muckle-Wells syndrome, a rare disorder characterized by occasional fever, skin rash and joint pain, according to the
U.S. National Library of Medicine
. As the disease progresses, it often leads to hearing loss and kidney damage.
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Developed by Vertex Pharmaceuticals, Kalydeco is a nearly $300,000-a-year drug that treats a rare form of cystic fibrosis in patients ages 6 years and older. About 4 percent of the nearly 30,000 people in the United States with cystic fibrosis has this variant, caused by a specific G551D mutation in the Cystic Fibrosis Transmembrane Regulator (CFTR) gene, according to the FDA.
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At an estimated cost of $300,000 per year, Acthar is an expensive drug largely because insurance won't cover its use because it's not FDA-approved. Manufactured by Mallinckrodt Pharmaceuticals, the drug is used to treat seizures in infants under 2 years old.
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Pompe disease
, also known as glycogen storage disease type II, that causes an accumulation of glycogen in the body's tissues, resulting in major damage primarily to the heart and muscles. It's a rare disorder affecting about 1 in 40,000 people in the United States.
Myozyme costs $100,000 per year to treat a child and three times that to treat adults. The drug is life-saving, but carries with it the possibility heart and lung failure or allergic shock as possible side effects.
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Hereditary Angioedema (HAE) afflicts between one in 10,000 and one in 50,000 Americans, causing swelling in the hands, face and throat, according to the Hereditary Angioedema Association. The condition can also cause abdominal pain, nausea and vomiting and can constrict airways enough to be fatal.
Derived from human blood, Cinryze is a $350,000-a-year medication to treat HAE.
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National Institutes of Health (NIH)
Next on the list is Elaprase, an enzyme replacement therapy that cost around $375,000 annually wholesale, and the price has likely only climbed since.
The drug is used to help patients dealing with
mucopolysaccharidosis II
, or Hunter syndrome, which occurs almost exclusively in males. No indications of Hunter syndrome appear at birth, but progressively develop over time, resulting in enlarged organs, constricted airways, skin abnormalities and more.
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Only around 800 people in the United States suffer from
Morquio A syndrome
, an inherited metabolic disease that leaves the body unable to break down long chains of sugar molecules. Symptoms include abnormal bone development, coarse facial features, short stature and more.
Manufactured by BioMarin Pharmaceutical, Vimizim is a treatment approved by the FDA just last year to treat the disease at a cost of $380,000 a year.
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Mucopolysaccharidosis type VI (MPS VI)
, also known as Maroteaux-Lamy syndrome, causes the body's tissues and organs to enlarge and become scarred. The condition also often results in skeletal abnormalities, according to the U.S. National Library of Medicine, often leading to short stature and joint abnormalities that affect mobility.
Also developed by BioMarin Pharmaceutical, Naglazyme is a $485,000-per-year enzyme replacement that promotes tissue growth and joint mobility, making it easier for patients to get around.
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Developed by Alexion Pharmaceuticals, Soliris treats
paroxysmal nocturnal hemoglobinuria (PNH)
, a disease that destroys red blood cells. Only around 8,000 Americans suffer from this condition, which can increase risk of infections and severe anemia. The drug improves quality of life, but it is not a cure, so patients with this condition need to spend around $536,000 a year for their continued treatment.
Four years ago, the FDA also approved its use for
atypical hemolytic uremic syndrome
, a life-threatening disease that affects kidney function due to the formation of abnormal clots in small blood vessels in the kidneys.
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Glybera is a drug that sets a new milestone for drug prices worldwide, the only drug on this list to cost over $1 million. A one-time series of 60 injections costs $1.21 million.
Made by UniQure, Glybera is for those coping with an extremely rare condition known as familial lipoprotein lipase deficiency, a literally one-in-a-million kind of disease. The drug is approved for use in the some 150 to 200 people with the disease in the European Union, but is not yet available in the United States.
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