Saving Money on Prescription Medications
Coupons, Discounts, and Manufacturer Programs
According to the Hypersomnia Foundation’s 2019 Idiopathic Hypersomnia (IH) Drug Challenges Survey, out-of-pocket costs for medications are a significant concern for our community. Thirty percent (30%) of survey respondents have had to make the difficult decision not to fill a prescription because the out-of-pocket costs were too high. While the cost of hypersomnia medications is clearly the primary concern, these tips and resources may help you lower your out-of-pocket costs for both your hypersomnia medications and those needed for other conditions. (You can also save on medications for your pets!) If you are currently not taking a medication because of high out-of-pocket costs, please read this page to see if there are coupons or programs that may allow you to afford your medications. Even if you are currently taking your medications, you may find a way to reduce your out-of-pocket costs. While the information on this page is geared towards the U.S. system of health insurance, we hope that those in other countries may find the information and references useful.
Finding the Best Price Using Your Insurance
While it is easy and convenient to use the pharmacy nearest your house, you may save money by shopping around. Insurance companies (even HMOs, such as Kaiser) negotiate different prices with different pharmaceutical chains and other outlets such as grocery store pharmacies. To find the lowest price available through your insurer, check your insurance company’s website for a price finder, or call customer service and ask which pharmacy would charge you the lowest out-of-pocket price for the medicine you need. If you take more than one medicine, the lowest price for each one may be at a different pharmacy.
It may be possible to reduce your out-of-pocket costs by filling your prescription through your insurance company’s mail order service, instead of through a local pharmacy. This is a particularly good option when you are taking stimulants and your local pharmacy is often out of stock. Start by calling your prescription medicine insurance company to ask if your medicine is available through mail order. If it is, ask whether 90-day prescriptions are allowed. If these options are available at your insurance company, ask them what steps you and your doctor need to take to start using this service. It may take a bit of effort to set up this method of filling prescriptions, but it will likely reduce both your costs and the hassle of continuing to fill prescriptions at the local pharmacy.
Another strategy for reducing your out-of-pocket costs while using your insurance is to use manufacturer coupons. Some manufacturers offer discount coupons to reduce the out-of-pocket costs for patients using their brand name medications. These coupons may also be known as copay savings programs, copay coupons, or copay assistance cards. Manufacturer discount coupons can be used with private insurance but usually not with Medicare Part D or other government-affiliated prescription insurance. For more information, see this GoodRx article.
Physician’s offices may have coupons for the medications they commonly prescribe, so ask your doctor when you receive a prescription. Alternatively, look for the official website of the manufacturer to see if they offer coupons. Manufacturer coupon websites for common IH medications are listed below:
Medication | Manufacturer | Website for Coupon Program |
Concerta (methylphenidate) | Janssen | |
Sunosi (solriamfetol) | Jazz Pharmaceuticals | |
Vyvanse (lisdexamfetamine dimesylate) | Takeda | |
Xyrem/Xywav | Jazz Pharmaceuticals | No website; coupon is automatically applied, if applicable, when patient enrolls with their specialty pharmacy |
If you are looking for manufacturer coupons for medications that are not commonly used to treat IH, GoodRx may help you find the manufacturer’s coupon program website. Go to GoodRx.com and type in the name of the medication. When the web page for the medication loads, click on “Savings Clubs”, then scroll down the page. If a manufacturer coupon program for that medication is in GoodRx’s database, information and a link to the website will be shown on this page.
Warning: Some insurance policies have implemented “copay accumulator” or “copay maximizer” programs which obstruct your ability to reduce your out-of-pocket costs by using manufacturer coupons. Before using manufacturer coupons, it is important to find out whether your insurance policy has implemented either of these programs. For a detailed explanation of these programs and how they impact your out-of-pocket costs, see Copay Accumulators and Maximizers.
Finding the Best Price Without Using Your Insurance
If you are uninsured or have been denied coverage for a medicine, prescription medicine discounts and coupon programs can dramatically lower your out-of-pocket costs for many medicines. For some medications, the cash discount price available at the pharmacy is actually lower than the insurance co-pay. Coupon programs may also lower your out-of-pocket costs below insurance co-pay amounts.
During the Hypersomnia Foundation’s 2019 survey on prescription medicine challenges, numerous people with IH or related sleep disorders wrote that they found the best prices at Costco pharmacies or by using GoodRX coupons. In some cases, the prices were so low that they decided not to use their insurance policy.
Before making the decision to forego using insurance, keep in mind that if you don’t use your insurance, the amount you pay for your medications will not be automatically applied to your annual deductible and out-of-pocket maximum. If you expect to reach your deductible, it may be a better strategy to use the insurance policy. It may also be possible to submit receipts for what you’ve paid out of pocket to your insurance company to help meet your deductible and out-of-pocket maximum. For information on how to do this, see How to Use GoodRx With a High Deductible Health Plan. Even if your insurance plan does not have a high deductible, we recommend calling customer service to find out if you may submit receipts for cash payment of medications to apply to your deductible and out-of-pocket maximum.
A 3-Step Process for Shopping for Prescription Medicines
Consumer Reports has researched the wide variation in medicine prices and published an article on how to shop around for better medicine prices. In summary, they recommend a three step process:
Step 1: Find and use online discounts. There are many prescription medicine savings programs. These programs negotiate with pharmacies to agree on lower prices for medications. When you use a prescription medicine coupon or savings card at a pharmacy, the price on the prescription is discounted based on the pharmacy’s agreement with the program.
GoodRx is a popular program and used by many people with hypersomnias. The GoodRx website and app allow you to type in the name of your prescription medicine, then your zip code, and you will see their lower negotiated prices at several nearby pharmacies. Following are links to GoodRx and several similar programs:
Program | Contact |
| 855-268-2822 | |
800-503-6897 | |
877-537-5537 | |
844-234-3057 | |
800-407-8156 | |
800-931-8872 | |
844-265-6444 | |
855-569-6337 | |
800-800-7616 | |
813-370-7495 | |
877-684-0032 | |
408-638-9379 | |
866-662-1351 | |
800-222-2818 | |
877-223-2146 | |
800-213-7632 | |
N/A | |
844-863-0353 |
Step 2: Widen your scope of where to shop for medicines. Because prices can vary widely, it is a good idea to ask for the in-store discounted price from several pharmacies. Although the in-store discounts may be available, they are rarely applied unless the customer asks. (In fact, pharmacies are often prohibited by their contracts with insurance companies from providing this information to customers unless the customer asks.) Sometimes the best prices may be found at grocery or independent pharmacies. Online pharmacies such as HealthWarehouse.com and Amazon Pharmacy also have low prices. Some large volume pharmacies have surprisingly low prices, especially Costco and Sam’s Club. Of note, you do not need to be a member to access the pharmacy services at either Costco or Sam’s Club.
Step 3: Ask a pharmacy directly whether it will honor discount online coupons.
If the online coupon price you found in step 1 is lower than available in-store prices that you found in step 2, you will have to ask if the pharmacy will honor the online coupon or discount card. Be sure to discuss your plans to use a discount program and agree on how you will pay when you place the prescription order. If it is not clear up front, the pharmacist will likely charge your insurance company or ring you up at a higher price.
Tips for Using Costco Pharmacy, Even If You Aren’t a Member
During the Hypersomnia Foundation’s 2019 IH Drug Challenges Survey, many participants took the time to write in comments about Costco having the lowest prices for their hypersomnia medications. While we do not endorse any pharmacy over the other, we want to make sure that our community knows about the opportunity to use both in-store and mail-order pharmacy services at Costco, even if you aren’t a member.
To find out how much you could save, you can simply call the Costco pharmacy to ask about the prices. If Costco has the lowest price, you can have your doctor send your prescription directly to the pharmacy. If prices change and you’d like to transfer your prescription to a different pharmacy, you can also do that via phone.
Those who choose to become a Costco member (for an annual membership fee) may join the Costco Member Prescription Program (for free) to obtain the lowest possible price. This additional discount is usually just a bit better than the non-member discount, so it’s best to ask about the price under both programs before signing up for membership.
Costco also has an online mail order pharmacy. The online pharmacy does not handle some scheduled medicines such as methylphenidate ER. They do carry modafinil and armodafinil. To speak to a Costco mail order pharmacist and find out if your medicine may be available through this program, call 1-800-607-6861 and follow the prompts to speak to a pharmacist.
(Note: Sam’s Club also allows non-members to use their pharmacy. If Sam’s Club is convenient for you, call them to compare prices.)
Moving a Prescription to a Pharmacy With a Lower Price
If you know the medication your doctor plans to prescribe for you and determine which pharmacy has the lowest out-of-pocket costs ahead of time, you can ask your doctor to send the prescription directly to the pharmacy of your choice. If, however, your prescription is already parked at a pharmacy and you’re paying a high price, you may need to move a prescription to a new pharmacy. Most prescriptions may be moved without restrictions. However, prescriptions for controlled substances have some restrictions such as limiting moves to only once or not at all. If you have any questions, talk to your new pharmacist about the best way to move your prescription.
The pharmacist at the new pharmacy will need the information on the bottle and your insurance information to facilitate the move. Be sure to let your doctor know that you’ve changed pharmacies so that future prescriptions go to your preferred pharmacy.
For general information on how to move a prescription and restrictions for scheduled medicines, see this article by GoodRx on Moving a Prescription.
Patient Assistance Programs
If your medication is still too expensive after exploring all insurance and coupon program options, then it is time to consider patient assistance programs. The toggled sections below provide an explanation of each type of program and contact information for the programs most likely to assist hypersomnia patients.
In addition, the Hypersomnia Foundation has partnered with Needymeds, which is an organization that assists patients in finding and working with patient assistance programs. If you can’t find what you need on their website, the Needymeds Helpline (800-503-6897) is open weekdays from 9a-5p Eastern. For an overview of how Needymeds helps patients save money on prescriptions, check out our webinar Your Best Self: Getting Your Meds.
The non-profit pharmacy Rx Outreach (1-888-796-1234) is a mail-order pharmacy serving people whose income is at or below 400% of the Federal Poverty Level. Qualifying individuals enroll with Rx Outreach (free) and pay only the published Rx Outreach price for medications. Rx Outreach offers several generic forms of stimulant and wake-promoting medications commonly prescribed for IH and related sleep disorders, including both immediate and extended release versions:
- methylphenidate, including CD and LA extended release versions (similar to Ritalin, Ritalin LA and Metadate CD)
- dextroamphetamine-amphetamine, including the ER extended release version (similar to Adderall and Adderall XR)
- dextroamphetamine sulfate ER (similar to Dexedrine)
- modafinil (similar to Provigil)
- armodafinil (similar to Nuvigil)
- bupropion, including SR and XL extended release versions (similar to Wellbutrin, Wellbutrin SR and Wellbutrin XL)
Many manufacturers offer programs to assist patients in paying for their medications if they are uninsured or underinsured and meet certain income criteria. You may also receive assistance from these programs if you have been denied coverage from a private insurer. If you have been denied coverage by a federal or state government funded program, manufacturer programs may or may not be allowed to provide assistance. These programs may also require specific diagnoses (e.g., a diagnosis of narcolepsy may be required). Because there is a known overlap between narcolepsy type 2 and idiopathic hypersomnia, it may be a good idea to discuss with your doctor whether you might be appropriately considered to have both diagnoses. Regardless of your insurance coverage, financial situation or diagnosis, we strongly recommend that you call the program and speak with a representative to find out if you qualify. And if you do not qualify at this time, always ask for an exception, and always apply again in the future, as eligibility criteria are constantly changing.
We have listed some of the medicines commonly prescribed for central disorders of hypersomnolence and a link to their Pharmaceutical Assistance Program (PAP).
Medication | Manufacturer Program Website | Phone |
Concerta (methylphenidate HCl extended release tablets CII) | 800-652-6227 | |
Concerta (methylphenidate HCl extended release tablets CII) | 800-652-6227 | |
Focalin (dexmethylphenidate) | 800-282-7630 | |
Nuvigil (armodafinil) | 888-TEVA USA (838.2872) | |
Rozerem (ramelteon) | 800-830-9159 | |
Strattera (atomoxetine) | 800-545-6962 | |
Sunosi (solriamfetol) | 833-533-5299 | |
Synthroid (levothyroxine) | 800-222-6885 | |
Vyvanse (lis-dexamfetamine dimesylate) | 800-830-9159 | |
Wakix (pitolisant) | 855-925-4948 | |
Xyrem (sodium oxybate) | 833-533-5299 | |
Xywav (calcium, magnesium, potassium, and sodium oxybates) | 833-533-5299 | |
Zelapar (selegiline) | 833-862-8727 |
Unfortunately, there are no patient assistance programs for flumazenil.
If you don’t see your medication on the list, you can go to the website of the pharmaceutical company that makes your medicine and see if they have a PAP. Alternatively, a few of the websites in the following section include tools that search for PAPs for a specific medicine.
This table contains links to organizations which provide means-based assistance for people with life-threatening or severe chronic disease. Some provide financial assistance to help people access the medications they need. Other organizations provide information on programs to help with daily expenses or links to patient assistance programs.
Organization & Website | Phone | Notes |
National Organization for Rare Disorders (NORD) Rare Care | 800-999-6673 | Manages an assistance program for narcolepsy. |
800-503-6897 | Dedicated to helping people who cannot afford medicine or health care costs. The free NeedyMeds Drug Discount Card can help you save up to 80% off the price of your prescription medications. NeedyMeds also provides information about Patient Assistance Programs and support for other costs related to health care. | |
N/A | Maintains a directory of Patient Assistance Programs. Search on the name of your medicine to find a program. | |
800-532-5274 | Provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. Includes a library of free resources on topics such as disability and insurance appeals. Financial assistance may be available for those with limited assets and income. | |
N/A | Provides information on assistance programs, charity organizations, and other resources that can help with paying bills, mortgage and debt expenses. | |
N/A | Matches patients with PAPs, resources and cost sharing programs. | |
N/A | Provides program descriptions and downloadable applications for prescription assistance programs for specific medications. | |
N/A | A nonprofit site with money-saving offers such as printable coupons and a searchable database of available patient assistance programs. | |
Medicare Extra Help | 800-633-4227 | Medicare beneficiaries with limited resources and income may qualify for Extra Help with their Medicare prescription medicine plan costs, worth about $5,000 annually. |
National Alliance on Mental Illness Paying for Medications | N/A | Information on money-saving programs for medications used to treat mental illness, including a list of patient assistance programs for medications commonly used for depression, anxiety, etc. |
Accessing New Medications for Free by Volunteering for a Clinical Trial
One way to try new medications for free is to volunteer for clinical trials. Medications given during clinical trials are provided at no cost to you or your insurance company. If you believe you responded to a medicine during a clinical trial, you may have a better idea of whether to go through the effort of obtaining access to the medicine if it is granted FDA approval and brought to market. You may also gain experience with personal efficacy of the medication in case you need to appeal to your insurance company for coverage of the new medication.
Some companies in late stage clinical trials offer “expanded access” to medications for those trial participants who responded positively to the medicine. Expanded access programs allow trial participants to continue to take the medicine for free for a period of time after their participation in the trial is complete.
The Hypersomnia Foundation website maintains a list of currently recruiting clinical trials on our website. Participants in our International Patient Registry at CoRDS may opt in to receive additional information about some of the upcoming clinical trials, so joining our registry is another great way to get timely information on trials that may interest you.
Additional Information
- The Global Genes RARE Toolkit, Navigating Health Insurance, covers all aspects of health insurance, including selecting a policy, appealing denials, and accessing medications at an affordable price.
- The Global Genes RARE Toolkit, Financial Advocacy in Rare: Navigating the U.S. Health System for Young Adults, includes basic information on finding health care and insurance coverage with a special focus on the needs of young adults with rare diagnoses. The Toolkit also includes sections on dealing with insurance company denials, plus tips on accessing and saving money on treatments.