Tag: Michelle Vogel

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Advocacy

Uninsured? Healthcare Help is Available

Professional support when you need it the most

David didn’t have health insurance when he was diagnosed with diabetes recently. The shock of having to cope with a severe chronic condition was bad enough, but now he was faced with having to pay nearly $700 per month just for the medication to treat his disease. Along with this, the American Diabetes Association estimates the added annual expense of treating this chronic condition is almost $18,000. With a family income of less than $24,000 a year, there was no way David would be able to afford this condition.

Unfortunately, when he turned to the two health insurance options available for low-income individuals, he fell through the cracks. Medicaid would cover his wife, and the Children’s Health Insurance Program (CHIP) would cover his two young children. But the Medicaid program is administered by states, each of which has their own rules and eligibility criteria. In Texas, a man like David who is not disabled and is under the age of 65, does not qualify for benefits. He could get coverage through the Health Insurance Marketplace Exchange, but it would cost him more than $300/month. This too was unaffordable.

When you’re in a situation where you need life-saving therapy, but you can’t afford insurance coverage, there are a variety of resources available to help cover the costs. Sometimes we just need help finding them.

While these resources may not be available for all chronic disease conditions, especially those that are rare, you may be surprised how much help is out there if you know where to look.  

Confide in your healthcare provider. This will help providers understand your needs better so they can help you stay healthy. For example, they may be able to prescribe a generic treatment or an alternative drug that is less expensive. Some may also be able to provide resources and suggestions for other options. David’s doctor, for example, gave him drug samples that could tide him over until he found a more sustainable way to pay for treatment.

Look for manufacturer assistance programs. Many pharmaceutical companies have programs that can provide financial assistance for the uninsured and copay assistance for those with insurance who are still unable to afford their medication. You can find this information by doing an internet search for the company that makes your medication, the name of the medication, and the term “patient assistance” or “financial assistance.”  

When David explained his situation to the patient care coordinator at the company that makes his medication, he was able to apply for and receive his medication free for several months until he could find a long-term solution.

See if you qualify for Social Security disability. If your disease makes it impossible for you to work, consider this option. The process is not easy or quick, but if you are accepted for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you will also qualify for Medicaid. The added good news about this program is Medicaid benefits will start retroactive to the date you applied for disability. Here’s the Social Security link.

Look for local resources. Local health departments and federally funded health clinics can help those with chronic conditions find medical care at little or no cost. The following directories can help you locate resources in your community:

Explore patient support groups. Nonprofit organizations exist for nearly every chronic disease. These groups can put you in touch with others who can provide support and real-world experience of living with your disease. Most also share evidence-based information and the latest research about how to live well with the condition. In addition, a number of these organizations also have an assistance fund to help those in financial need afford the care they need.

CSI Pharmacy’s website provides support group contact information for many of the patient communities that we serve.

For other conditions, do an internet search using terms that include the name of the disease and “support group.”

Look for help through charity organizations. A variety of nonprofit foundations provide financial assistance grants targeting specific conditions or medications. The following are organizations we are aware of that provide this sort of help. You may find others by searching for “financial assistance” and the name of your disease or medication.

  • Accessia Health (formerly known as Patient Services, Inc.) helps with insurance copays and premiums, ancillary costs of care, travel expenses, and infusion costs for a range of chronic and rare diseases. They also provide free legal help for those trying to navigate the confusing systems of disability and health insurance.
  • The Assistance Fund provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses for 80 specific disease communities. Be aware that this source will only support medications that are FDA-approved for the condition you have.
  • Healthwell Foundation provides financial assistance to help with prescription copays; health insurance premiums, deductibles, and coinsurance; pediatric treatment costs; and health-related travel costs. Their list of disease funds is limited, and they often exhaust available funds quickly, so you may need to keep checking to see if funds relevant to you are available.
  • National Organization for Rare Diseases (NORD) provides financial assistance to help pay for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. The list of diseases with which they work is limited to specific rare diseases. They also have a list of resources that provide financial assistance beyond rare disease.
  • Patient Advocate Foundation provides qualified patients with financial assistance for co-pays and co-insurance for prescription drugs for those living with specific disease states. In some instances, assistance with insurance premiums and/or ancillary services associated with the disease also may be available. Individuals must have health insurance, have a confirmed diagnosis, live in the US, and meet certain income limits.

These resources are provided as a service to our patient communities. CSI Pharmacy does not certify or vouch for any of the organizations listed here nor do we benefit in any way from providing this information. If you choose to access these resources, please review the organization’s information carefully before committing to its services or benefits. 

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Advocacy

Copay Accumulators Raise Barriers to Care

pharmaceutical equipment on money showing the value of CSI pharmacy

Alyse has always been the one to come down with every infectious disease that’s going around. As a child, she often spent much of the winter with colds, sinus infections, and ear infections, which were treated with antibiotics. When she was hospitalized with her second bout of pneumonia in one year, her primary care doctor referred her to an immunologist who diagnosed her with common variable immune deficiency (CVID).

CVID is one of more than 450 rare, chronic conditions called primary immune deficiency diseases (PIDD) that are caused by a hereditary defect in the way the body fights infections. For PIDD patients, a part of the immune system is missing or doesn’t function properly, opening the person to all types of potentially dangerous infections.

When Alyse was finally diagnosed properly, her immunologist started her on immune globulin (IG) therapy. These treatments, which she gets intravenously every four weeks, replace the important immune proteins her body is missing. Now, Alyse can live more normally without fear of contracting the kind of severe infections that once made her chronically sick.

Immune globulin is made from donated human plasma and is very expensive. A single infusion can cost as much as $20,000. Until recently, Alyse’s insurance plan covered much of the cost, assessing a manageable $50 per month as a copayment. Over the last few years, however, the out-of-pocket cost for her IG therapy has increased due to a higher deductible plan. Alyse now has a $5,000 deductible before her insurance will cover any of her IG therapy in addition to copays she has to pay until she meets her out-of-pocket maximum of $10,000.

Still, she’d been able to afford her out-of-pocket costs due to the copay assistance offered by the drug manufacturer. For PIDD, the drug manufacturers have copay assistance programs from $2,500 to $10,000 a calendar year which helps her cover the costs

While it was still a struggle, this copay assistance helped Alyse afford the copay for the first few months of the year. This was because the amount paid by the manufacturer’s assistance program counted toward her insurance plan’s $10,000 annual out-of-pocket maximum, which includes all her copays and coinsurance and the deductible she must pay each year. Once she reached this maximum, the plan would pick up the entire cost of her treatments for the rest of the year.

A New Surprise

This year, however, without informing her, Alyse’s insurance plan instituted a copay accumulator program (also called a copay adjustment or maximizer program). This is an insurance industry trend intended to encourage patients to choose lesser expensive or generic medications rather than the more expensive brand names. Unfortunately, there are no less expensive alternatives for this essential treatment for PIDD and many other diseases.

With the copay accumulator program, copay assistance from a third party, like the drug manufacturer, a charitable organization, or a patient support group, is not counted toward a patient’s out-of-pocket maximum. That means the assistance Alyse receives to offset the monthly cost of her treatments no longer counts. After her assistance is used up, she is still responsible for the full amount of the copay charges until she reaches the annual out-of-pocket maximum.   

This has sent Alyse into a panic. There’s no way she can afford to pay $5,000 deductible all at once, as well as the additional copays until she meets her out-of-pocket maximum for her treatments. And without the treatment, she’s terrified that she will again fall victim to chronic, debilitating infections.

Many patients depend on the assistance they get from manufacturers and charities to afford the high cost of specialty medications. Copay accumulators limit a patient’s access to these life-saving therapies. They are extremely harmful to patients, both financially and in terms of their health and wellbeing.

Legislation that Will HELP

Many states and the federal government are now looking at this insurance industry practice and working to eliminate copay accumulator programs. A dozen states and Puerto Rico have already banned the practice. At the federal level, Congress is moving to control high out-of-pocket health insurance costs with the Help Ensure Lower Patient (HELP) Copays Act, a bipartisan bill (HR 5801) introduced in the House of Representatives last November.

The Immune Deficiency Foundation (IDF), the National Hemophilia Foundation, the National Organization for Rare Disorders (NORD), and more than 60 other organizations supporting serious and chronic disease patients have come together to form the All Copays Count Coalition, an organization committed to eliminating this barrier to care at both the state and federal level. Addressing this issue at both legislative levels is important because some insurance plans are regulated by the federal government, while others are regulated at the state level. 

IDF encourages those who use immune globulin therapy to support efforts to make #AllCopaysCount. They encourage you to contact your members of Congress and let them know that you support the HELP Copays Act. NORD and IDF are also following state-level legislation.

In the meantime, not all health insurance plans include a copay accumulator program. When you sign up for a new plan, it’s important to be sure to look for this restriction in the fine print (or call the company) and choose one that doesn’t restrict third-party copays. This may not be easy to determine. If you need help, our Patient Advocates are available to help you find the plan that’s right for you. Email us at [email protected].

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Uncategorized

Open Enrollment is NOW

working at a computer devoted to work at CSI pharmacy

Do you feel like you are paying too much for healthcare services and prescription drugs under your current health insurance plan? Does your insurer require you to try and fail at less costly therapies before allowing the treatment your doctor has prescribed? Is the medication your doctor prescribed denied by because it isn’t listed on your plan’s formulary?

Now may be the most important time of the year if you are dissatisfied with your health insurance coverage. We are currently in the middle of Open Enrollment season for Medicare and the Affordable Care Act (ACA) Marketplace plans. For those insured under employer plans, the end of the year is also a time when new or updated plans are often offered, allowing employees to make changes to their benefits plans.

The following are important deadlines to keep in mind for applying for or making changes to insurance coverage for 2022:

  • Medicare Open Enrollment ends December 7.
  • ACA Open Enrollment ends January 15 (coverage starts February 1).
    • Deadline for ACA coverage to start on January 1 is December 15.
  • For employer plans, check with your human resources manager.

CSI Pharmacy is here to help you navigate the system. We are experts at understanding the fine print in health insurance policies. We can help you review your options and find the plan that best meets your healthcare needs as well as your budget.

For those who are having trouble paying for healthcare coverage, here are some options that can help:

Medicare Assistance Programs – If you are unable to afford Medicare premiums, several types of State Medicare Savings Programs are available to help you pay your Medicare premiums. In some cases, they may also pay deductibles, coinsurance, copayments, and prescription drug coverage costs. Each of the programs has different eligibility criteria. There are even programs that allow individuals who delayed enrollment into either Medicare Part A or Part B to enroll outside regular enrollment periods. In some cases, qualifying for these programs automatically qualifies you to get Extra Help to pay for Medicare drug coverage.

To see if you qualify for these programs and to apply, contact your State Medicaid Program or Department of Social Services. You can also call 1-800-MEDICARE (1-800-633-4227) to get the phone number for your state’s Medicaid office.

Extra Help – If you meet certain income and resource limits, you may qualify for Extra Help in paying for your Medicare prescription drug plan premiums, deductibles, and copays. Depending on your income and state of residence, you may pay less or nothing for premiums and deductibles, and copays are capped at an affordable rate.

For additional information and to see if you qualify, see the Extra Help webpage at Medicare.gov. In some cases, you may automatically qualify if you qualify for the Medicare Savings Programs above. If you don’t automatically qualify, there is a link on the Extra Help page where you can apply.

Medicaid is a joint federal/state program that helps with medical costs for those with limited income and resources. Each state has different eligibility requirements and application processes. You can now apply for Medicaid either through the ACA Marketplace or directly with your state Medicaid agency. See this website for more information and to see if you qualify. You can also call 1-800-MEDICARE (1-800-633-4227) to get the phone number for your state’s Medicaid office.

PACE – Program of All-Inclusive Care for the Elderly (PACE) is a comprehensive healthcare program through Medicare and Medicaid that helps individuals remain in the community rather than going to a nursing home or other extended care facility. The program provides a team of healthcare professionals who work with you and your family to coordinate your care. It covers all the services this team decides you need, including drugs, provider visits, transportation, home care, hospital care, and nursing home stays when needed.

You never pay a deductible or copay for any drug or service provided. If you are covered by Medicaid, long-term care is also fully covered. If you have Medicare but not Medicaid, there is a monthly premium for long-term care and Medicare drug coverage (Part D). Enrolling in PACE, however, means you are required to use a PACE-preferred physician and the other providers associated with the plan.

PACE is only available in some states and only in some areas. To qualify, you must:

  • Be 55 or older
  • Live in the service area of a PACE organization
  • Need nursing home-level care (as certified by your state)
  • Be able to live safely in the community with help from PACE

To find out if you qualify and if there is a PACE program in your area, search for PACE plans in your state, or call 1-800-MEDICARE (1-800-633-4227) to get the phone number for your state’s Medicaid office.

Veterans Benefits – If you qualify for health benefits from the Department of Veterans Affairs (VA), you can receive both Medicare and VA benefits, but they don’t work together. Medicare doesn’t pay for any care provided at a VA facility, which is the only place VA benefits are offered. Many veterans use their VA benefits to get services not covered by Medicare, such as prescription drugs. For more about eligibility and benefits, call the VA Health Administration Center at 1-800-733-8387 or 1-877-222-8387.

ACA Marketplace – Uninsured individuals and families who do not qualify for the government-funded programs above can still get coverage, often at a discount, through the ACA Health Insurance Marketplace, also known as the Exchange. ACA plans are offered through private insurers participating in the Exchange. They all provide the same essential health benefits, and you cannot be denied based on pre-existing conditions. You can review plans and apply for coverage at Healthcare.gov. In completing the application, you can also see if you qualify for free or low-cost coverage through Medicaid, or for savings on a Marketplace plan.

Marketplace plans and insurers change every year. This year premium subsidies enacted under the COVID-related American Rescue Plan Act (ARPA) last year are still in effect for 2022. This means many Americans will qualify for lower premiums. The number of insurance companies participating has also increased, so there are more options to choose from. If you currently have a Marketplace plan, you may want to consider exploring these options to see if you can find a more affordable rate rather than allowing you current plan to auto-reenroll.

If you make changes to your health insurance coverage, be sure to notify your healthcare providers and your pharmacist so the transition to the new plan is smooth.

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Advocacy

Standards Still Apply

Recently, a patient we will call Angela posted a note on a private Facebook page describing a troubling situation she encountered with her home IVIG infusions. She wrote to the group of fellow immune globulin (IG) patients that her infusion company decided that the nurse no longer needed to stay with her for the duration of her infusion.

Because of coronavirus infection risk, some infusion companies are apparently trying to limit the time the nurse spends in the patient’s home. The nurse is instructed to set up the infusion and stay until it had been increased to the scheduled drip rate, then she is to leave, for the rest of the day. Another patient in the group posted that her nurse didn’t leave, but she spent most of the time of the infusion sitting in her car outside the house.

“My infusions take basically eight hours, and she will be here for two of them,” Angela posted. “She’s going to teach my husband how to draw and administer diphenhydramine [an antihistamine used to counteract an allergic reaction, also known as Benadryl] in case of an emergency. I am nervous for sure. What will we do if air gets in the line? What will we do if something goes wrong?”

Angela’s concerns are not unfounded. Leaving the patient during an infusion can be dangerous and violates strict standards of care established by the Immune Globulin National Society (IgNS), an organization of Ig therapy professionals.

“As nurses, our duty is to provide safe and effective nursing care,” says Brittany Isaacs, RN, IgCN, Director of Nursing at CSI Pharmacy. “Our nursing judgement should not be clouded by situations that place a patient or their safety in jeopardy. Our duty is to do no harm, so we need to protect both the patient and ourselves during any encounter. Ensuring proper personal protective equipment is donned to keep everyone safe and following the guidelines outlined by the CDC, WHO, IgNS, and the Infusion Nurses Society allows a nurse to continue to provide safe and effective nursing care during home infusions.”

While COVID-19 has caused many changes in healthcare protocols, patient safety should always be the ultimate guiding principle. The following guidelines are drawn from IgNS’s Immune Globulin Standards of Practice and COVID-19 Resource Guide and FAQ.

During the COVID-19 pandemic, patients receiving in-home immune globulin therapy can expect the following from their specialty pharmacy or home infusion company:

  1. Pharmacy personnel will wear personal protective equipment while packing the medications and supplies that are sent to the patient’s home.
  2. The home infusion nurse will be screened by their company for COVID-19 symptoms to ensure they will not carry infection into the patient’s home.
  3. Patients will be screened to ensure they do not have COVID-19 symptoms before being infused.
  4. Nurses will wear personal protective equipment, including masks, gown, gloves, and face protection, while in the home.
  5. Social distancing should be maintained to the extent possible, except when providing direct patient care.
  6. Patients should wear a mask or face covering while the nurse is in the home.
  7. Patients can request that their specialty pharmacy include masks, gloves, and hand sanitizer in their IG shipment.

The following practices are not acceptable, even during COVID-19 restrictions:

  1. Neither the patient nor a family member should be taught to self-infuse IVIG or to remove the IV after the infusion is completed.
  2. The infusion nurse should never leave the home for any reason while the infusion is in process. This includes sitting in her/his car outside of the home during the infusion.
  3. Family members should not be asked to leave the home during the infusion.
  4. Nurses should never refuse to wear personal protective equipment.

If you are uncomfortable or do not feel safe with your infusion company’s changes in protocol, please do not stop treatment! Staying on therapy is vital. If your company is unwilling to adhere to these standards of care, you may want to consider changing companies. If you need help with this, CSI Pharmacy’s patient advocates can help, even if you are not our patient.

Additional resources can be found here:

Infusion therapy standards of practice. Journal of Infusion Nursing

Immune Globulin National Society – Standards and guides

The role of an IG infusion nurse. IG Living Magazine. August/September 2013

National Home Infusion Association

IDF guide for nurses: Immunoglobulin therapy for primary immunodeficiency diseases Immune Deficiency Foundation