Hidradenitis suppurativa (HS) is a chronic disease. It's also painful and crippling. If you have HS, there's a good chance you have other health conditions, too. For example, HS often comes with obesity, diabetes, high cholesterol, and high blood pressure. You're more likely to have one or more mental health disorders. Autoimmune conditions also are common in people who have HS.
Despite treatment options for HS, you may find it hard to keep your HS and its symptoms controlled. It can be hard for your HS and wounds to heal. Because of challenges treating HS, many people face high costs for medical care.
Compared to other skin conditions, people with HS more often end up in the emergency room or hospital, which is especially costly. You may need surgery. One study showed more than 15% of people with HS spent time in the hospital over the course of three years. More than 1 in 4 also ended up with costly bills from ER use.
If you have HS and concerns about your finances or health insurance, you're not alone. It's important to know there are steps you can take to lower your costs and get help with your medical bills.
HS Disparities and Costs
You're more likely to have HS if you're Black. Overall, about 1% of people have HS. But a systematic review of 39 studies found that Black people have HS more often than people in other racial or ethnic groups. In the Black community, 1.3% of people have HS. That's compared to 0.75% in the White community. HS rarely happens in people who are Hispanic or Latino.
HS happens more often in people who have lower incomes. Their HS also may be more severe. The reasons for this aren't clear. HS hasn't been studied enough to be sure why disparities in HS or its treatment exist. But it's likely related to many different things, including differences in:
- Nutrition or access to healthy food
- Prescription drug coverage
- Health insurance
- Representation in clinical studies
- Other health conditions
- Your ability to work
Health Insurance and HS
Health insurance is a big factor in your ability to see a dermatologist or HS specialist as needed to get the best HS treatment. It also affects how much you might pay out-of-pocket for it. Black people more often lack health insurance. You're also more likely not to have enough health insurance, or to be underinsured, when you're Black in the U.S. compared to if you're White. These disparities may affect your ability to get the preventive health care you need for HS and other health conditions. They also contribute to disparities in HS treatment and its costs.
One study found that Black people with HS who did have health insurance more often had Medicare or Medicaid. They were less likely than White people with HS to have private health insurance. These disparities in health insurance coverage can affect the ability to get medicines to manage your HS. For example, it may be harder to get certain medicines covered by your insurance. More expensive or newer medicines may be more difficult to get due to costs and lack of coverage.
These differences in health insurance coverage can lead to disparities in HS diagnosis and treatment. Studies show that people with HS who are Black are more likely to get diagnosed later only after HS gets worse, when you're more likely to have severe HS episodes. All of this can lead to higher health care costs in hospitals and emergency rooms and financial concerns related to HS.
Indirect Costs of Having HS
HS comes with indirect costs along with the cost of treatment, medicines, and other supplies, such as bandages. Indirect costs refer to costs that come from lost productivity. HS may make you less productive at work than you would be if you didn't have HS. You may not be able to work at all. Or, if you do work, you might have to call out more often.
One study found indirect costs of HS were especially high in people with a new diagnosis. Those with a new diagnosis of HS had less growth in their incomes over time. They also were more likely to stop working. The study showed that people with HS overall missed more days of work than people without HS. They also had lower incomes.
These indirect costs of HS can make it harder to pay for your treatment. Trouble working or not being able to work may affect your access to private health insurance coverage and the type of health insurance you have.
Ways to Lower Your HS Treatment Costs
There are many treatments for HS, including new medicines known as biologics. They're called biologics because they are monoclonal antibodies made from living cells. Biologics don't work for everyone, but they may work best if you start them earlier for HS that is moderate or more severe. But biologics are expensive.
Many people in the U.S. with HS and other conditions alike have trouble paying for their medicines. Treatment costs can make it more likely that you'll stop taking your medicine. But not taking your HS medicines can worsen your health over time, leading to even higher costs. There are some steps you can take to lower your treatment costs:
- Talking with your doctor or another member of your care team about the costs of your medicines
- Making sure you need all the medicines you're taking
- Checking to see which of your treatment options will be covered by your health insurance, if you have health insurance
- Asking about generic or cheaper drug options to manage your HS
- Comparing the costs of your medicines at different pharmacies where you live or by mail
- Checking to see if you can get a different plan to cover your prescriptions
- Exploring any low-cost lifestyle changes you might make to help with your HS
Ask your doctor or care team if there are any patient assistance programs or other resources available to help cover your treatment costs. One of the best ways to keep your medical costs lower is to take steps to manage your HS proactively. By sticking with your HS treatment, you may be able to avoid or limit costly trips to the ER. You're also more likely to avoid surgeries or being admitted to the hospital.
HS and Disability
If HS is making it so you can't work, you might qualify for Social Security Disability Insurance. It's often just called "Disability." Ask your doctor if you might qualify, and contact social services where you live. To decide if your HS qualifies as a disability, you'll need information about:
- How long you've had HS and how often it flares
- Your prognosis or outlook
- Where your HS lesions are and how big they are
- Your ability to function in a work environment
- What you and others say about your condition and how it affects you
The Social Security Administration does list hidradenitis suppurativa in a list of chronic skin conditions that may qualify for disability.
Where to Find Help with HS Treatment Costs
You may be able to get help paying for medical bills with government health insurance programs or other programs. Your eligibility will depend on:
- Your income
- Age
- Whether you have a job
- Your HS and other health conditions
Insurance programs that may help with your treatment costs include:
- Medicaid
- Medicare
- The Affordable Care Act (ACA)/ Health Insurance Marketplace
If you need more help, ask if you qualify for charity care. Many drug companies also offer patient assistance programs to help with treatment costs.
Show Sources
Photo Credit: Getty Images
SOURCES:
BMJ Open: "Disease burden and cost of hidradenitis suppurativa: a retrospective examination of US administrative claims data."
Journal of Medical Economics: "What happens after a single surgical intervention for hidradenitis suppurativa? A retrospective claims-based analysis."
JAMA Dermatology: "Health Care Utilization Patterns and Costs for Patients With Hidradenitis Suppurativa."
Journal of the National Medical Association: "Racial disparities of delay in diagnosis and dermatologic care for hidradenitis suppurativa."
Journal of Cutaneous Medicine and Surgery: "Race-Specific Prevalence of Hidradenitis Suppurativa."
Journal of Drugs in Dermatology: "Racial Disparities in the Treatment of Hidradenitis Suppurativa: An Analysis of Data from the National Ambulatory Medical Care Survey."
RMD Open: "Cost assessment of health interventions and diseases."
The British Journal of Dermatology: "Impact of hidradenitis suppurativa on work loss, indirect costs and income."
Journal of the American Academy of Dermatology: "Biologics in hidradenitis suppurativa: Progress and new directions."
UpToDate: "Patient education: Coping with high prescription drug prices in the United States (Beyond the Basics)."
Chicago Booth Review: "How Proactive Healthcare Can Save on Costs."
Social Security Administration: "Disability."
USA.gov: "How to Get Help With Medical Bills."
