When couples decide they want a baby they want a baby now, or at least nine months from now. So when month after month of "TTC" (trying to conceive) goes by and "2WW"(two weeks waiting) gets you a "BFN" (big fat negative) on your home pregnancy test, you and your "DH"(dear husband) are understandably disappointed, frustrated and shocked. Eventually many couples seek help, have a fertility workup and get prescriptions for injectable fertility drugs as part of a treatment plan which may also include IUI (intrauterine insemination) or IVF (in vitro fertilization).
Despite the fact that infertility is a disease, not a social condition, most Americans do not have insurance coverage for diagnosis or treatment. Only 14 states have a mandate that requires fertility benefits to be offered or covered. These mandates vary widely in their language and scope. Few employers electively choose to offer fertility benefits despite the fact that a 2006 Mercer Report ,which surveyed more than 900 employers, found that those who did offer coverage said they have not experienced an increase in their medical costs as a result of providing coverage for fertility treatment, even IVF. These employers offer benefits because they want their employees "to have access to quality, cost-effective care and to be recognized as a family-friendly employer and attract and retain valued employees."
So on top of the emotional and physical stress associated with fertility treatments, money becomes an issue for many couples. The cost of ultrasounds, blood work and an IUI or IVF procedure are compounded by the cost of the drugs that go hand in hand with treatment. Many couples are unsure what, if anything, their health plans cover and when they discover the price of fertility drugs some become desperate.
"Gonal-F Pen 900 IU $275 each, Gonal-F 75 IU $20 per vial, Follistim 900 IU $250, Cetrotide 0.25 mg $25. Buyer pays shipping".
This isn't a price list on a pharmacy website; it's a post by a patient selling fertility medications on the internet.
"I have some supplies for sale, Follistim 300 IU unopened box, kept in fridge. I am asking $100 or best offer."
"Looking to purchase 30 vials of Repronex, please respond with your best price. We're getting desperate and could really use the favor of a good price or donation."
It doesn't take long trolling the fertility message boards and chat rooms to see these postings and other references to websites where fertility drugs are bought and sold by patients. Most reputable websites with Message Boards or Chat Rooms clearly state in their guidelines that federal restrictions strictly prohibit the sale or exchange of medications on line and that posting messages engaging in this activity is forbidden. Many have moderators who remove such posts. This is not a new problem but a weakened economy may increase its prevalence. An article in The Lowell Sun recently reported that black market fertility drugs are "advertised among listings for real estate, puppies and used cars. And if you didn't know a thing about infertility, you might miss them altogether." But if you know what you're looking for, you will find it. An ABC piece from November 2005 titled "Black Market Fertility Drug Trade Grows, Despite Risks" said it took their news team just minutes to find 6 websites that sold drugs. The Food and Drug Administration warns "consumers have no assurance that the drug is what it is. It could have been watered down or even counterfeit. It's a buyer beware situation." It is illegal to sell drugs without a state issued pharmacy license and the FDA further cautions that drugs bought on the Internet from foreign countries may not be up to their standards. Patient to patient drug sales actually risk the possibility of prosecution, if caught, but that's not the worst case scenario.
The most expensive fertility drugs, the gonadotropins, stimulate the ovaries to make more than one egg so that the likelihood of pregnancy is increased with an IUI or IVF procedure. Each of these drugs has specific instructions for storage and shipping. Some need to be refrigerated and shipped with a cold pack, most should not be exposed to extremes of temperature. Pharmacies are required to meticulously record lot numbers and expiration dates of medications that they receive and dispense. Drugs are stored and shipped according to the manufacturer's directions to assure quality control. But pharmacists have no control over medication storage once the patient gets them home. That is why pharmacies are not allowed to accept returned medications from patients or re-dispense them.
On the surface it seems like a great solution. Patients who spent lots of money on fertility drugs they no longer need and cannot return look to recoup some by selling those leftover drugs, at a steep discount, to other patients who are struggling to pay full price at a pharmacy. But when patients buy leftover medications over the internet there is no guarantee that those medications didn't sit on a porch in Minnesota during a February cold snap or in a car in the heat of a Miami summer. There is a reason why pharmacies are licensed by the state and staffed by licensed professionals. To invest money, time and emotions on fertility treatments and gamble that drugs bought on the street we call the internet is truly just that, a gamble. If the ovaries don't respond as expected, there are fewer eggs than anticipated, the pregnancy test is negative the concern will always be "Was it the bargain leftover drugs?"
"Had my last IUI on Saturday. I really hope it works because if it doesn't we're done. We just can't afford IVF. We will still try on our own but I don't think that will work. Wish me luck…."
Patients drop out of treatment or continue to pursue less successful options because their financial resources make it impossible for them to continue or move to more expensive therapies with greater success rates. So where can cash strapped couples turn with their fertility prescriptions? Fertility specialty pharmacies are the best option. They should have a benefits department that will investigate coverage for medications. Some drugs may be covered because they are used for other medical conditions; some may be covered under medical rather than pharmacy benefits.
Concerned couples do have resources. A call to EMDSerono's Fertility Lifelines (866-LETS-TRY) gives access to Benefits Coordinators who will take insurance information, contact the carrier and pre-screen pharmacy benefits even before the initial appointment with a fertility specialist. Additionally, there are special savings programs offered by some pharmacies in conjunction with specific pharmaceutical companies on specific fertility drugs. Fertility Assist 2, an EMDSerono program, allows health care providers to enroll their patients paying cash for Gonal-F at Freedom Fertility Pharmacy. By simply placing a sticker on the Gonal-F order patients receive savings on their first cycle. If the patient needs a second cycle of Gonal-F, they can save $250 or $500 depending on the quantity of Gonal-F purchased in each cycle. There is also a Compassionate Care program through Fertility Lifelines (866-LETS-TRY) that allows patients with no insurance coverage and documented medical and financial need to receive one cycle of medication free of charge.
When in doubt patients should ask their health care providers for advice on filling their scripts. Most are aware of programs or upcoming clinical trials that might best meet their patients' needs and can point them in the right direction. Navigating the world of infertility treatment can be an adventure and having a professional guide is one of the benefits of being cared for by fertility specialists.
Mercer Health and Benefits Survey Results 2006
How to save money on fertility Drugs, Marisa Cohen, Conceive Magazine, Special Issue 2008-2009
Some Women Turn to "Black Market" For Pregnancy Drugs, posted May 15, 2008 @ http://www.nbc4.com/
High costs drive black market in fertility drugs, Christine Phelan, Lowell Sun, October 13, 2008