A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Setting
2.2. Selection of Drugs
2.3. Data Collection
2.4. Data Analysis
2.4.1. Price
2.4.2. Affordability
3. Results
3.1. Basic Information of the Surveyed Rare Disease Drugs
3.2. Price
3.2.1. Basic Information on Drug Prices
3.2.2. Median Price Ratio (MPR)
3.3. Affordability
3.3.1. Affordability of Out-of-Pocket Cost without Health Insurance
3.3.2. Affordability of Out-of-Pocket Cost with Health Insurance
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Condition | Medicine Name | Type a | Indications for Rare Diseases Only b | Dosage Form | Minimum Strength | Median Unit Price (CNY) | MPR (MSH) c | MPR (PBS) c |
---|---|---|---|---|---|---|---|---|
Amyotrophic Lateral Sclerosis | Edaravone | LPGs | N | injection | 5 mL:10 mg | 8.44 | NA | NA |
Riluzole | OBs | Y | tablets | 50 mg | 68.46 | NA | 7.01 | |
LPGs | Y | tablets | 50 mg | 25.00 | NA | 2.56 | ||
Primary Carnitine Deficiency | Levocarnitine | LPGs | Y | oral solution | 10 mL:1 g | 8.01 | NA | NA |
Adrenal Hypoplasia Congenita | Hydrocortisone | LPGs | N | tablets | 20 mg | 0.97 | 3.48 | 0.68 |
Congenital Myasthenic Syndrome | Pyridostigmine | LPGs | Y | tablets | 60 mg | 0.92 | 0.79 | 0.88 |
Fabry disease | Agalsidase beta | OBs | Y | injection | 5 mg | 5874.05 | NA | NA |
Gaucher Disease | Imiglucerase | OBs | Y | injection | 400 IU | 20,081.22 | NA | NA |
Glycogen Storage DiseaseⅠ, Glycogen Storage DiseaseⅡ | Alglucosidase alfa | OBs | Y | injection | 50 mg | 5271.63 | NA | NA |
Hemophilia | Recombinant human coagulation factor Ⅷ | OBs | Y | injection | 250 IU | 999.65 | NA | NA |
LPGs | Y | injection | 250 IU | 887.50 | NA | NA | ||
Human coagulation factor Ⅷ | LPGs | Y | injection | 200 IU | 378.65 | NA | NA | |
Human prothrombin complex | LPGs | Y | injection | 200 IU | 177.79 | NA | NA | |
Emicizumab | OBs | Y | injection | 30 mg | 8133.25 | NA | NA | |
Hepatolenticular degeneration | Penicillamine | LPGs | N | tablets | 0.125 g | 0.79 | 0.68 | 0.48 |
Hereditary Angioedema | Danazol | LPGs | N | capsules | 0.1 g | 1.02 | 0.61 | NA |
Tranexamic acid | OBs | N | tablets | 0.5 g | 2.02 | NA | 2.04 | |
LPGs | N | injection | 0.25 g | 5.25 | 0.45 | NA | ||
Homozygous Familial Hypercholesterolemia | Ezetimibe | OBs | N | tablets | 10 mg | 6.89 | NA | 3.75 |
LPGs | N | tablets | 10 mg | 6.74 | NA | 3.67 | ||
Evolocumab | OBs | N | injection | 1 mL:0.14 g | 1299.53 | NA | 2.10 | |
Rosuvastatin | OBs | N | tablets | 10 mg | 5.55 | NA | 4.04 | |
LPGs | N | tablets | 5 mg | 0.10 | NA | 0.08 | ||
Atorvastatin | OBs | N | tablets | 10 mg | 3.33 | 32.79 | 2.73 | |
LPGs | N | tablets | 10 mg | 0.10 | 0.98 | 0.08 | ||
Hyperphenylalaninemia | Sapropterin hydrochloride | OBs | Y | tablets | 0.1 g | 8.33 | NA | 0.11 |
Idiopathic Hypogonadotropic Hypogonadism | Highly purified meMtrophin | OBs | N | injection | 75 IU | 238.70 | NA | NA |
MeMtrophin | LPGs | N | injection | 75 IU | 19.08 | NA | NA | |
Recombinant human choriogonadotropin | OBs | N | injection | 250 μg: 0.5 mL | 192.97 | NA | 1.25 | |
Chorionic gonadotrophin | LPGs | N | injection | 1000 IU | 6.43 | 0.61 | 0.88 | |
Idiopathic Pulmonary Arterial Hypertension | Sildenafil | OBs | N | tablets | 0.1 g | 81.93 | NA | 3.89 |
LPGs | N | tablets | 25 mg | 1.58 | NA | 0.10 | ||
Ambrisentan | OBs | Y | tablets | 5 mg | 61.20 | NA | 0.37 | |
LPGs | Y | tablets | 5 mg | 22.34 | NA | 0.13 | ||
Bosentan | OBs | Y | tablets | 0.125 g | 53.00 | NA | 2.66 | |
Selexipag | OBs | Y | tablets | 0.2 mg | 47.37 | NA | 0.31 | |
Macitentan | OBs | Y | tablets | 10 mg | 138.01 | NA | 0.57 | |
Idiopathic Pulmonary Fibrosis | Nintedanib | OBs | Y | capsules | 0.15 g | 127.20 | NA | 0.86 |
Pirfenidone | LPGs | Y | capsules | 0.1 g | 13.69 | NA | 1.22 | |
Multiple Sclerosis | Baclofen | OBs | N | tablets | 10 mg | 2.53 | 8.59 | 4.37 |
LPGs | N | tablets | 10 mg | 1.26 | 4.28 | 2.18 | ||
TerifluMmide | OBs | Y | tablets | 14 mg | 283.15 | NA | 6.07 | |
Young-Onset Parkinson’s Disease, Early Onset Parkinson’s Disease | Piribedil | OBs | N | tablets | 50 mg | 2.44 | NA | NA |
Levodopa and Benserazide Hydrochloride | OBs | N | tablets | 0.25 g | 1.93 | NA | 1.68 | |
Carbidopa and Levodopa | OBs | N | tablets | 0.25 g | 1.66 | NA | 0.93 | |
Compound Carbidopa | LPGs | N | tablets | 0.275 g | 2.47 | 2.53 | 2.50 | |
Entacapone, Levodopa and Carbidopa | OBs | N | tablets | 0.325 g | 7.67 | NA | 2.27 | |
Rasagiline | OBs | N | tablets | 1 mg | 40.00 | NA | 5.28 | |
Selegiline | OBs | N | tablets | 5 mg | 3.21 | NA | 2.26 | |
LPGs | N | tablets | 5 mg | 2.89 | NA | 2.04 | ||
Pramipexole | OBs | N | tablets | 0.25 mg | 5.45 | NA | 6.93 | |
LPGs | N | tablets | 0.25 mg | 2.63 | NA | 3.35 | ||
Ropinirole | LPGs | N | tablets | 0.5 mg | 8.17 | NA | NA | |
Trihexyphenidyl | LPGs | N | tablets | 2 mg | 0.18 | 1.88 | 0.73 | |
Amantadine | LPGs | N | tablets | 0.1 g | 0.12 | NA | 0.12 | |
Rotigotine | OBs | N | patches | 9 mg: 20 cm2 | 38.16 | NA | 3.14 | |
Primary Combined ImmuMdeficiency | Human ImmuMglobulin (pH4) | LPGs | N | injection | 1.25 g | 273.63 | 1.33 | NA |
Progressive Familial Intrahepatic Cholestasis | Ursodeoxycholic acid | OBs | N | capsules | 0.25 g | 8.41 | NA | 2.83 |
LPGs | N | tablets | 50 mg | 1.76 | NA | 0.23 | ||
Severe Congenital Neutropenia | Recombinant Human Granulocyte Colony–stimulating Factor | OBs | N | injection | 0.1 mg | 272.53 | NA | NA |
LPGs | N | injection | 75 µg | 31.74 | NA | NA | ||
Spinal Muscular Atrophy | Nusinersen | OBs | Y | injection | 5 mL:12 mg | 552,261.00 | NA | 1.91 |
Tuberous Sclerosis Complex | Everolimus | OBs | N | tablets | 5 mg | 130.01 | NA | 1.65 |
Medicine Name | Type a | Indications for Rare Diseases Only b | Total Usage per Month | Health Insurance Catalogue | Days of Daily per Capita Disposable Income | |||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
OOP without Health Insurance | OOP with Health Insurance | |||||||||||
Urban Residents | Afforda-bility c | Rural Residents | Afforda-bility c | Urban Residents | Afforda-bility c | Rural Residents | Afforda-bility c | |||||
Edaravone | LPGs | N | 60 mg × 14 | Class B | 5.50 | N | 12.44 | N | 3.07 | N | 6.94 | N |
Riluzole | OBs | Y | 0.1 g × 30 | Class B | 31.85 | N | 72.10 | N | 17.76 | N | 40.20 | N |
LPGs | Y | 0.1 g × 30 | Class B | 11.63 | N | 26.33 | N | 6.49 | N | 14.68 | N | |
Levocarnitine | LPGs | Y | 2 g × 30 | Class B | 3.73 | N | 8.44 | N | 2.08 | N | 4.70 | N |
Hydrocortisone | LPGs | N | 30 mg × 30 | Class A | 0.34 | Y | 0.77 | Y | 0.12 | Y | 0.28 | Y |
Pyridostigmine | LPGs | Y | 0.18 g × 30 | Class A | 0.64 | Y | 1.45 | N | 0.24 | Y | 0.53 | Y |
Agalsidase beta c | OBs | Y | 5 mg × 30 | No | 1366.61 | N | 3093.24 | N | 784.98 | N | 1776.76 | N |
Imiglucerase c | OBs | Y | 300 IU × 30 | No | 4671.94 | N | 10,574.65 | N | 4090.31 | N | 9258.17 | N |
Alglucosidase alfa c | OBs | Y | 0.1 g × 30 | No | 1226.46 | N | 2776.01 | N | 644.83 | N | 1459.52 | N |
Recombinant human coagulation factor Ⅷ | OBs | Y | 700 IU × 8 | Class B | 173.65 | N | 393.05 | N | 96.83 | N | 219.17 | N |
LPGs | Y | 700 IU × 8 | Class B | 154.17 | N | 348.96 | N | 85.97 | N | 194.58 | N | |
Human coagulation factor Ⅷ | LPGs | Y | 700 IU × 8 | Class A | 82.22 | N | 186.10 | N | 30.26 | N | 68.49 | N |
Human prothrombin complex | LPGs | Y | 700 IU×8 | Class B | 38.61 | N | 87.38 | N | 21.53 | N | 48.72 | N |
Emicizumab | OBs | Y | 15 mg × 30 | No | 946.11 | N | 2141.46 | N | 946.11 | N | 2141.46 | N |
Penicillamine | LPGs | N | 0.5 g × 30 | Class A | 0.74 | Y | 1.66 | N | 0.27 | Y | 0.61 | Y |
Danazol | LPGs | N | 0.2 g × 30 | Class B | 0.47 | Y | 1.07 | N | 0.26 | Y | 0.60 | Y |
Tranexamic acid | OBs | N | 2 g × 30 | Class B | 1.88 | N | 4.25 | N | 1.05 | N | 2.37 | N |
LPGs | N | 2 g × 30 | Class A | 9.77 | N | 22.12 | N | 3.60 | N | 8.14 | N | |
Ezetimibe | OBs | N | 10 mg × 30 | Class B | 1.60 | N | 3.63 | N | 0.89 | Y | 2.02 | N |
LPGs | N | 10 mg × 30 | Class B | 1.57 | N | 3.55 | N | 0.87 | Y | 1.98 | N | |
Evolocumab | OBs | N | 420 mg × 1 | Class B | 30.23 | N | 68.43 | N | 16.86 | N | 38.15 | N |
Rosuvastatin | OBs | N | 10 mg × 30 | Class B | 1.29 | N | 2.92 | N | 0.72 | Y | 1.63 | N |
LPGs | N | 10 mg × 30 | Class B | 0.05 | Y | 0.11 | Y | 0.03 | Y | 0.06 | Y | |
Atorvastatin | OBs | N | 20 mg × 30 | Class B | 1.55 | N | 3.51 | N | 0.86 | Y | 1.96 | N |
LPGs | N | 20 mg × 30 | Class B | 0.05 | Y | 0.11 | Y | 0.03 | Y | 0.06 | Y | |
Sapropterin hydrochloride c | OBs | Y | 1400 mg × 30 | No | 27.13 | N | 61.41 | N | 18.61 | N | 42.12 | N |
Highly purified menotrophin | OBs | N | 75 IU × 30 | No | 55.53 | N | 125.70 | N | 55.53 | N | 125.70 | N |
Menotrophin | LPGs | N | 75 IU × 30 | Class B | 4.44 | N | 10.05 | N | 2.48 | N | 5.60 | N |
Recombinant human choriogonadotropin alfa solution | OBs | N | 250 IU × 30 | No | 44.89 | N | 101.62 | N | 44.89 | N | 101.62 | N |
Chorionic gonadotrophin | LPGs | N | 250 IU × 30 | Class A | 0.37 | Y | 0.85 | Y | 0.14 | Y | 0.31 | Y |
Sildenafil | OBs | N | 60 mg × 30 | No | 11.44 | N | 25.89 | N | 11.44 | N | 25.89 | N |
LPGs | N | 60 mg × 30 | No | 0.88 | Y | 2.00 | N | 0.88 | Y | 2.00 | N | |
Ambrisentan | OBs | Y | 7.5 mg × 30 | Class B | 21.36 | N | 48.34 | N | 11.91 | N | 26.96 | N |
LPGs | Y | 7.5 mg × 30 | Class B | 7.80 | N | 17.65 | N | 4.35 | N | 9.84 | N | |
Bosentan | OBs | Y | 0.25 g × 30 | Class B | 24.66 | N | 55.82 | N | 13.75 | N | 31.12 | N |
Selexipag | OBs | Y | 1.8 mg × 30 | Class B | 99.19 | N | 224.50 | N | 55.31 | N | 125.18 | N |
Macitentan | OBs | Y | 10 mg × 30 | Class B | 32.11 | N | 72.68 | N | 17.90 | N | 40.52 | N |
Nintedanib | OBs | Y | 0.38 g × 30 | Class B | 74.97 | N | 169.69 | N | 41.80 | N | 94.62 | N |
Pirfenidone | LPGs | Y | 2.4 g × 30 | Class B | 76.44 | N | 173.02 | N | 42.62 | N | 96.47 | N |
Baclofen | OBs | N | 50 mg × 30 | Class B | 2.94 | N | 6.66 | N | 1.64 | N | 3.71 | N |
LPGs | N | 50 mg × 30 | Class B | 1.47 | N | 3.32 | N | 0.82 | Y | 1.85 | N | |
Teriflunomide | OBs | Y | 14 mg × 30 | Class B | 65.88 | N | 149.11 | N | 36.73 | N | 83.14 | N |
Piribedil | OBs | N | 0.2 g × 30 | Class B | 2.27 | N | 5.14 | N | 1.27 | N | 2.87 | N |
Levodopa and Benserazide Hydrochloride | OBs | N | 0.45 g × 30 | Class A | 0.81 | Y | 1.83 | N | 0.30 | Y | 0.67 | Y |
Carbidopa and Levodopa | OBs | N | 0.45 g × 30 | Class B | 0.70 | Y | 1.57 | N | 0.39 | Y | 0.88 | Y |
Compound Carbidopa | LPGs | N | 0.45 g × 30 | Class B | 0.94 | Y | 2.13 | N | 0.52 | Y | 1.19 | N |
Entacapone, Levodopa and Carbidopa | OBs | N | 0.45 g × 30 | Class B | 2.47 | N | 5.59 | N | 1.38 | N | 3.12 | N |
Rasagiline | OBs | N | 1 mg × 30 | Class B | 9.31 | N | 21.06 | N | 5.19 | N | 11.75 | N |
Selegiline | OBs | N | 5 mg × 30 | Class B | 0.75 | Y | 1.69 | N | 0.42 | Y | 0.94 | Y |
LPGs | N | 5 mg × 30 | Class B | 0.67 | Y | 1.52 | N | 0.37 | Y | 0.85 | Y | |
Pramipexole | OBs | N | 2.5 mg × 30 | Class B | 12.68 | N | 28.70 | N | 7.07 | N | 16.00 | N |
LPGs | N | 2.5 mg × 30 | Class B | 6.12 | N | 13.85 | N | 3.41 | N | 7.72 | N | |
Ropinirole | LPGs | N | 6 mg × 30 | Class B | 22.81 | N | 51.63 | N | 12.72 | N | 28.79 | N |
Trihexyphenidyl | LPGs | N | 10 mg × 30 | Class A | 0.21 | Y | 0.47 | Y | 0.08 | Y | 0.17 | Y |
Amantadine | LPGs | N | 0.2 g × 30 | Class A | 0.06 | Y | 0.13 | Y | 0.02 | Y | 0.05 | Y |
Rotigotine | OBs | N | 6 mg × 30 | No | 5.92 | N | 13.40 | N | 5.92 | N | 13.40 | N |
Human Immunoglobulin (pH4) | LPGs | N | 31.5 g × 1 | Class B | 53.47 | N | 121.04 | N | 29.82 | N | 67.49 | N |
Ursodeoxycholic acid | OBs | N | 0.75 g × 30 | Class A | 5.87 | N | 13.29 | N | 2.16 | N | 4.89 | N |
LPGs | N | 0.75 g × 30 | Class A | 6.14 | N | 13.90 | N | 2.26 | N | 5.12 | N | |
Recombinant Human Granulocyte Colony–stimulating Factor | OBs | N | 0.14 mg × 30 | Class B | 88.77 | N | 200.92 | N | 49.50 | N | 112.03 | N |
LPGs | N | 70 µg × 30 | Class B | 6.89 | N | 15.60 | N | 3.84 | N | 8.70 | N | |
Nusinersen | OBs | Y | 0.1 mg × 30 | No | 1070.71 | N | 2423.48 | N | 1070.71 | N | 2423.48 | N |
Everolimus | OBs | N | 10 mg × 30 | Class B | 60.49 | N | 136.93 | N | 33.73 | N | 76.35 | N |
Categories | OOP a without Insurance | p b | OOP with Insurance | p b |
---|---|---|---|---|
OBs vs. LPGs | ||||
OBs | 3339.30 | 0.001 | 1901.18 | <0.001 |
LPGs | 480.00 | 267.98 | ||
Indications for rare diseases only vs. Indications for multiple diseases | ||||
Indications for rare diseases only | 292.80 | 0.001 | 163.27 | <0.001 |
Indications for multiple diseases | 9080.85 | 4319.07 |
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Mu, Y.; Song, K.; Song, Y. A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China. Int. J. Environ. Res. Public Health 2022, 19, 13319. https://doi.org/10.3390/ijerph192013319
Mu Y, Song K, Song Y. A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China. International Journal of Environmental Research and Public Health. 2022; 19(20):13319. https://doi.org/10.3390/ijerph192013319
Chicago/Turabian StyleMu, Yan, Kuimeng Song, and Yan Song. 2022. "A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China" International Journal of Environmental Research and Public Health 19, no. 20: 13319. https://doi.org/10.3390/ijerph192013319